Primary school Auties: into 2020! - thread 4

[LightTripper]

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous threads:

Thread 1: www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2: www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

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

Crikey Lottie that's awful, hope your DH recovers well and you're ok at home. Well done to your DS for his concert. I know what you mean about worrying about the future. My DS is considered "high functioning " in appearance (does that make sense?? I mean People are often surprised he's autistic) and yet I see so many little things that worry me. I've just clicked that a lad he looks up to and thinks is his friend is actually spinning him along a bit and gently mocking him. DS cannot sense or spot it at all. I feel sort of cold with fear and a bit sick when I see things like that. Like when he was in the park one time playing an imaginary game on his own and a big group of lads surrounded him, he had no instinct he was in trouble and I belted over to get him.

Most of my fears at the moment for DS are around the fact that he looks typical and is expected to cope and adapt. I feel it makes him very vulnerable in a social sense, because no allowances are made.

Does anyone k ow what I mean? Not being v articulate!

Danni ds's Christmas concert sounded brilliant, well done to your ds.

Hope your dd is feeling a bit better littleswede.

Well done to your dd light. So great to see so much progress in a year. Hope you are managing to have a quiet weekend to decompress.

I saw a special news program on that chocolate company a while ago open. It looks so great.

Hope you and ds are feeling ok today dimples.

Well done on the Christmas concert mapland.
I know what you mean about how other people treat ds, it scares me too. My ds is more obviously autistic and as he gets older it's pretty clear he is different to the other children. I am trying as much as possible to surround him and us with people who are kind and understanding but obviously can't influence who is he sees in the wider community.

Wow lottie hope your dh is better soon! Must be really stressful for all of you. We have been very lucky with my DM and PILs, but then we have quite a lot of autism in the extended family on both sides so I think everyone is kinda used to it now!

School breaks up on Thursday here. Looking forward to having a break from the routine but also worried about the lack of structure.
Ds has also been invited to his first ever class party. I think we will attempt to take him, I might send dh in case he gets out of hand!

Map it does make you go cold, doesn’t it. I am sure that your ds’ social understanding will improve as he matures though. I suppose as they grow older we can gently use social stories and ‘think through’ style chats to help them understand the more negative social encounters as well as positive ones.

danni great about the party invite. Definitely take dh for support!

Ds got a nice amount of cards on Friday which was lovely. It was bittersweet to see how the other childrens’ writing was coming on though. Ds still has so far to go. We’ve done no work at home this last week as he’s been poorly, hopefully we can get back to it today.

Dh and I had a lovely Christmas lunch out with friends yesterday. PIL looked after ds. Their first time this year!

I know what you mean about the cards Open. I have got DS to write is name (in huge letters) in some cards but all his classmates have written out their cards themselves in little cards - I had to buy big ones for DS.

DS seems to have come out of the other side of the bug but I'm feeling rough still.

dimples I just did all of ds’ myself (there’s no way he’s going to write it 29 times) though I will get him to write his name in the teacher and TA’s larger cards.

And glad ds is better. I hope you’re on the mend soon

We got 5 xmas cards home on Friday, yes I agree with the writing from others, all the children have written beautifully. last years writing was more on par with ds this year, kind of, if I had to compare.

ds wrote his out, well I wrote the To xxxx love from and he just did his name but his letters were all back to front massive etc. 1 letter of his name is an a but he does his a's like e's for some reason like a lot of his letters actually, they don't look like they are supposed too! so i got a card back with that letter of his name spelt with an e instead of a! I bet that child's parent think I'm a right hippy spelling ds name like 'that'

His school annoyed me a bit, I asked for a class list (I got one in reception) she didn't give me it, I asked again a week later incase she had forgotten and she still didnt get me a list so I had to do about 15 cards of names by asking ds. It's not great really since they know I won't know any of the names as I don't go into the playground at all! Some names he said I'd not even heard of, So I imagine they don't even exist, oh well I sent them in 😆

In his book bag Friday was a party invite with ds name and his class and when I opened it, it said to rsvp as she needed to pay per head, so I just wrote a quick text saying thanks for inviting ds I wouldn't of seen her at school as ds did different hours (I also wasn't sure if this name on the invite was a boy or girl as it could be either and ds didn't have a clue when I asked so I hoped by texting she would give me an idea) anyway she replied back, xxxxx isn't in xxxxx class but she speaks about him all the time so I asked the teacher what class he was in to invite him.

I thought that was really nice!

Always girls who invite him or want to play with him, very rarely a boy. I'm thinking maybe bcos ds is so gorgeous the girls are drawn to him!

Yesterday we went on the train, I literally don't take ds out the house anymore unless I have to as he's such hard work but dh persuaded me insisted so we went. I had hold of ds in the train station before coming home and he lunged away from me and only went and set the bloody fire alarm off it was going off for over half an hour! (School have had to tape shut the fire alarm in his class for the same reason!)

How embarrassing though, train station was packed. Lol

Yes yes to the bittersweet seeing other kids' writing.

Danni that's lovely the girl's mum made the effort

danni that is lovely. It’s a proper friend invite rather than just a full class invite. What a lovely girl. Is it the same one you mentioned before that he was talking about? Ds seems to play more with girls than boys, they are probably more motherly than the boys, and less unpredictable?

Yes, embarrassing about the fire alarm but maybe now they will get a cover for it. You should charge them for health and safely advice!

Ds did the same in a children’s centre. The enticing button was without a cover and within arms reach of a 5yo. We all had to evacuate and they couldn’t find the key to turn it off for ages. The person running the group was fine about it. she said it highlighted the weakness in their system

Open no this is a girl I've never heard him talk about before. She has quite an unusual name. The girl before was the one who wrote him that I love you you are brilunt note haha I've kept that in his box.

Ds did his reading book before bed and was reading words like quiz & quick, so that's good he knows the qu sound now, now just the sh and ch he still hasn't grasped suppose I've got 3 weeks to entertain him next week so I'll have to do a bit of that.

I got his learning plan for this term (which I'm having to ask for - yet in reception was readily given to me each term no asking) and on it one of the targets was to read a sentence.

He already does! He's reading 12/13 page level 2 books at home. Sometimes I think they set these targets knowing full well he's already doing it....

That's a bit cheeky if they're setting targets he can already do - I don't get why teachers do that but I have noticed a tendency to minimise difficulties.

Took DS to an autism friendly session at a museum today, it was worth the effort, although having said that DS had a whopping meltdown in the middle of a gallery and I had to manhandle him out which felt rubbish for us both. But great relief that his behaviour wasn't out of place today iyswim

DS is always trying to (and sometimes succeeds) pull the orange disability cords. Lifts are a real danger zone for us as his main obsession us bells. He is v drawn bell picture on the alarm button - I am lucky that you have to hold those down for at least 5 seconds to activate them!

Very much regretting trying to get DS to sign the cards but have 16 done so far. We have also made cards for teacher, TA and close family and I have written my cards so we're well on the way.

I hope you’re feeling better dimples. Well done on getting started with the cards.

Map I’m glad the museum visit went well. I must see if any of ours do one. We’ve been hesitant to take ds to one so far (since he was a baby anyway) because I think he’d be more interested in running up and down pretending to be Andy Day for hours rather than looking around at interesting things. Hmm, reading that back, we have taken him to a couple of small local ones when we’ve been away on holiday. He tends to want to rush around everything numerous times.

danni cheeky of the school, hopefully you can put them straight. I remember that note, it was so lovely 😍. A couple of ds’ cards had hearts drawn on them which was sweet.

I got him to write his name in the teacher and TA cards so that’s something plus he did some spellings on Squeebles. I need to input a new set for him tomorrow and make a note to update them more frequently going forward. He didn’t do any reading so that’s the priority tomorrow after a play date with friends.

Ds had a good night last night. The first time he’s slept through since he got ill. I’m still super tired, heading to bed shortly and hoping for another good night 🤞

DD finished already but has a big pack of maths for the holidays and quite a lot of reading books (including a really weird one about food in art: the pictures are HORRIBLE!!)

Sorry your DH is ill Little and hope he's back to health and home soon. Have they told you how long he might be in for?

Lovely about the invitation danni !

Map I know exactly what you mean. I do think some of it they will just learn by observation over time, but I think I was always pretty immature/behind socially (though obviously I didn't see that at the time!) and DD will probably be the same. I dealt with it by being nice to everybody and being a bit of a doormat in the hope they would like me, which didn't really work in the teenage years and probably wasn't the best for my mental health, but did pay off in the long term as I have lovely friends now who appreciate somebody who is just straightforward and tries not to piss people off. I've bought a couple of "social skills" type books for DD, though haven't started them yet but I think the time might be coming soon. Just stuff about conversations, other people will be interested in different things, etc. In some ways I worry because I don't want to squash her or just teach her how to mask, but on the other hand these are things I remember learning "consciously" later because I got them wrong, and I think I would have loved having a book that just told me the "rules" up front. It's a hard balance between trying to teach them some of this stuff and damaginng their confidence in who they are: but to some extent I see it all just as life skills like maths or grammar that you can teach and some people take to more naturally and others need a bit more guidance and practice, but we can all get to a minimum level needed to be part of society, if that makes any sense.

Light- In some ways I worry because I don't want to squash her or just teach her how to mask, - yes, this! But also yes, maybe it's like grammar or maths ......

Ds got sent home from school at 2pm yesterday, apparently he had been sick and was poorly, so I picked him up straight away, he ran out of the office asking me for 10 sweets and a party bag (!?) and was his fine usual hyper self, so I said to his teacher, I thought he was poorly? No he's not. she looked a bit embarrassed actually when ds was doing his usual jumping about.

I asked ds if he was sick he said yes, when his tummy was running, so he's basically from what I can gather, ran around and made himself sick, he is also sick when he coughs / tantrums / swallows something without chewing properly etc, for reference (doesn't take a lot to make him cough up)

They won't let him back until Thursday, he's not poorly, not at all. He's missed his Christmas party that we've counted down for because he's been so excited about party day and now is asking me every 30 seconds when it's party day? when is it party day mummy? when is ds going to party day mum? He doesn't understand school won't let him back etc.

Honestly, I'm not happy. Should they not be able to distinguish between an over excited child and a poorly one?

Apparently she asked him if he was poorly and he said yes, it's ds ffs ask him if he's got a million quid in his back pocket and he would say yes! He says yes to everything.

I probably sound such a cow, but I genuinely would be happy to have him off if he was, you know... poorly!

Next time, they can face time me from the office, unless he looks and sounds poorly I'm not going to get him

Oh danni, that’s annoying and what a shame he’s missing the class party.

You will have to have a little party for the two of you at home instead.

Ds last day tomorrow.

That is a shame Danni! I guess it's easier for them to have a blanket rule, but not very fair on DS! I agree, hopefully he'll find a home party fun as an alternative.

How are you feeling today open - did you get a good night's sleep in the end last night?

He came to ww with me today (he stayed in the car with my mum - I wouldn't dare unleash his behaviour on a room mostly full of retired posh old ladies )

I've lost 17.5lb in 7 weeks!

We have played a LOT of hungry hippos today. He's done some mp sounds lump, bump, jump etc. That's the sound he has being doing at school so we have done some at home. He did a bit of handwriting / drawing up his arms / kitchen table. He's also ripped 3 holiday brochures to smithereens I figured it was good for fine motor and it kept him quiet for 20 minutes at least so I let him crack on.

I did phone school today (yes I was one of those parents!) to ask if it was necessary for him to be off tomorrow since he's not at all poorly, I also mentioned that when I picked him up at 2pm yesterday that he was certainly not poorly and hasn't been since, I said I just wanted to check because the school down the road is 24 hours for sickness plus my friend who we are going out with tomorrow has a 10yr old and his school is 24 hours too, ds is not ill so annoyed me all the more, although didn't tell them I was annoyed lol. office said yes it is necessary and to see him Thursday. They had sent home 10 children yesterday and another 4 today apparently.

Whatever, suppose if it's rules you have to stick to it. Although maybe they should revise policy like other schools and lower the overall time off or if they are well such as ds is, to let them go back after 24 hours and then they won't need to send an attendance letter out to parents every year when whole school attendance is below the level they expect?!

I also know nuro / neuro (?) virus is doing its rounds so I appreciate they have to be cautious, it's just not what ds has. if I hadn't already mentioned it hahaha

I feel so pathetic being annoyed and I do realise I am pathetic, but it's literally the only respite I get from ds when he's at school, his sleeping is shit too despite his melatonin, he was awake from 1.15am the other morning and didn't go back to sleep until 9pm that night! Without the sob story that I'm sure I've told you before lol I don't get any help from anybody with him dh is useless at the best of times, but the job he does, xmas is his busiest time of the year, he's barely been home, so I rely on ds going to school for my mental space and to do the things almost everything that are impossible to do with him in tow

He finishes at lunch on Friday too. Then 3 weeks of madness starts, although at least for that I have had time to mentally prepare myself.

I think by now if you have read this far, you will realise, that my ds goes to school even with his arms hanging on by threads and it takes something serious for him to get a day off 🙈 LOL

No parent of the year awards coming this way I'm afraid!

Open how is ds sleep? As above, ds isn't great

Danni I completely understand where you are coming from. School is my main respite too, although ds does sleep ok now we have the melatonin.
Also frustrating having prepared him for something so well and then not be able to go. We have an 'oops' visual that we use when things like this happen. We either just show it to ds or cover over the picture of the thing we were going to do with it. Sometimes it works.

Ds had an ok day today although he just asked me to put a plaster over his ear (last time that happened he had an ear infection) and he's now gone to sleep with his noise cancelling headphones on. Really hope he's not coming down with something!

Hope everyone is feeling better after all the sickness!

Just popping on to say that I too get the respite of school thing danni, you are not pathetic at all. I do almost all the nightshifts with DD and she never sleeps through nowadays. So I'm permanently sleep deprived and the only way to cope with DD's meltdowns after school and at the weekend is by trying to gather my strength whilst she's at school. I worry that school can't support her and she'll end up out in which case I'll have no respite.

Oh @danni that does sound annoying especially if he'd been counting down to the party but I guess they have to have a rule. Argh though! @mapland I know what you mean about being careful about masking. I follow some asc adults on Twitter and this comes up as a regular issue. My take on it is that everyone needs some level of knowing what is acceptable in society, it's just that for nt people the hidden rules come more naturally, so our puppets have to work harder to understand it all. As I always have too, if I'm honest. On the positive side, doorbell rang last night at bedtime and I opened the door, DH was there! He's been discharged!!

Poppets, not puppets!! Silly phone!