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

dimples that’s great - what a Christmas present! I remember you saying they have assumed attachment issues?

A good day here. A lovely visit from a friend and her ds (ASC), my sister visited and ds thoroughly enjoyed himself watching a few You’ve been framed Christmas episodes. He loved it.

Glad you had a good day Open.

Yes, they generally put it down to attachment issues or developmental trauma (which he definitely has). But I also think ASD and possibly ADHD ...Well, we'll see but it was nice to talk to someone more open to considering that it might be more than one thing. In general now that we have EHCP and DLA I'm not sure a diagnosis would help much right now but I think it might be useful in the future.

If he is autistic then I’m sure a diagnosis will be useful for him in the future, it will help him understand himself better. I’m glad someone has listened to you.

Glad you had a good day @open sounds fun. @dimples76 that's an amazing xmas present! Excellent! We're still waiting for a second assessment date after the first said asd traits when asc is pretty clear! What I find really helpful are forums like this and other sen meetups as people just understand things so much more! We went to our first Spectrum event last month at an indoor climbing place and it was amazing. Staff so patient and understanding. DS actually climbed while I was worried that he wouldn't even want to put the harness on. He really surprised me and it shows how important patience and kindness are. We're going to a Santa breakfast event with the same group next week.

Lottie you must live fairly near me I think

Hehe how funny @openupmyeagereyes

We’re members of Spectrum too though we haven’t been to any events yet.

I’m tempted to try climbing now since your ds did better than you thought he would. If only they weren’t so early!

We've only been to one thing but everyone was so nice and understanding, patient, didnt rush DS to get clipped on etc. Took it all on his terms, which I think is why it worked better. Spectrum are a national thing though aren't they?

Are they? I didn’t realise. Perhaps we aren’t close to each other then at all

I'm not totally sure though ha!

I've done that thing again, where I be been reading along but forgetting to post and now there's loads of posts! So hope everyone is doing ok.

We have had an ok start to the holiday, ds enjoyed the party but only managed about 40mins of it. I think that's pretty good.
We finally got him in the bath today after about 3 months of not washing. Very nice to have a clean child.
We are still struggling massively with turning off the TV in the evening and I've now got a fat lip from being head butted, not fun. We've tried so many different methods but really it just seems to come down to how ds is feeling on the day.
My christmin is seriously lagging too!

Hello all; sounds like Christmas hols are off to a fair start. Sorry I’ve not posted for a while it’s been flat out here. We had a paediatric appt three weeks ago, the second of the three appts on the pathway up here. Paediatrician was so kind to DD during play based tests, didn’t let on at all that DD had reached the maximum she could manage and blended each one so well; it was very comforting to see as DD is so acutely aware of what she finds hard. I didn’t want her to get a feeling of failure, if that makes sense. At the end of the meeting (2 hours) the paediatrician said if she could give the ASD diagnosis now, at this stage, she would, and that she’d be very, very surprised if she didn’t get diagnosis next month. One very helpful thing she said was that she was confident to rule out anything else like ADHD, PDA etc. That’s helped narrow the field and helped me adjust how I tackle behavioural things already. It’s been a long two years but hopefully we’ll be all settled this time next month and will know what we’re dealing with for sure. That constant self-doubt and nagging guilt may be put to bed for good!
I hope the rest of the Xmas hols goes well for you all.

Open and Lottie are actually 6000 miles apart 😆😆 made me laugh anyways!!

We've watched a bit of cola bear express (polar express) this afternoon, btw no idea why ds calls it that. He only wants to watch the bit where the ticket goes out the door flys around and comes back into the train, it literally blows his mind. He looks so shocked and really can't work out how it happens, bless him. He rewinds it on his iPad so many times I think I know that part of the film off heart.

Catch up tomoz off to bed now, night! 💤

P.s furry we have adhd aswell as the Asd here, and a lot of pda type behaviours, he has adhd (he got a verbal diagnosis of adhd from his neuro consultant in March but won't have a written diagnosis or medication until 7, which is standard here - he was diagnosed with Asd at 3) ds doesn't fit pda profile as usually they are advanced in imagination and good at masking at social situations neither of which ds is. We do have a lot of pda type behaviours though, including his need for control and his anxiety etc. Ds controlling is out ridiculous, it's relentless all day long.

Here's a funny one! he told me the other night when I was laid in bed with him, stop moving your back up and down (I was breathing ) which I told him so! and he said stop breathing 🤣 to which I said I'm afraid that's not possible and he went absolutely crackers and then wouldn't go to sleep until he was sure my back wasn't moving up and down he kept waking up from his sleep to check and touching my back to make sure 🙈

Bloody mind bending trying to figure out what behaviour is from what. probably why I don't have a great grip on ds behaviour actually, as I haven't found anything that works

Good news on being one step closer to a diagnosis.

Liv fab news on the bath! Such a relief when you manage to get them to do something they strongly resist.

6000?! I don't get it!! DS got annoyed with me at bedtime as his xmas story book says that there are candy canes for all but, on close inspection of the picture, not all of the elves have a candy cane so I shouldn't have said it apparently! Now have watched uncle buck and now got the sex and the city film on, little vino, xmas pretzels. Hello festive season!

Oooh, movie vino and pretzels sounds just the thing!!

I just sent out what is hopefully my last bit of work before Christmas! Finished wrapping too I think. We're taking the kids to the science museum tomorrow (went shortly before Christmas a couple of years ago and it was very quiet so hoping we might be lucky again! Will probably now be rammed...) and then packing in the evening, heading to my folks the following morning (if the car starts... we drive so rarely it quite often refuses and we had to buy one of those portable battery chargers.... Has saved us more than once!!)

DC both wildly overexcited. I don't know how they can maintain this level for so long really!! But anyway, they're happy so we're happy.

Hope everyone has a good little run to the big day!

That's great that the assessment went well furrycat. I remember being really relieved when ds got his diagnosis, now I'm surprised that I thought he wouldn't get it!

Love the cola bear express danni. We haven't seen it, maybe that's a good one to get ds and dd on to.
I think the controlling behaviour is the most difficult to deal with. Because ds's language is still behind I just tend to get whacked if I'm not doing things the right way.

Well I suppose that is very observant of him Lottie. Hope you had a nice evening!

Light well done on finishing all your work, must be a relief. London seems pretty quiet at the moment so hopefully it shouldn't be too crazy at the museum. Hope you have have a good trip.

Ds has now resorted to being naked, so I guess we may have a clean but naked Christmas Day here. Sings and roundabouts!

liv a great result for the party and hooray to a clean child for Christmas! Sorry about the head butting and the TV though. Some days ds will really fuss about the iPad and other days not, as you say it depends on mood.

Furry I’m glad that the second appointment went well and that they have given you an indication of that the dx will be rather than keeping you guessing. We got our dx a week before Christmas two years ago

danni loving cola bear express, so sweet. Less so the breathing though! .

Light I hope the museum was quiet.

Yes to the controlling behaviour being difficult. If ds doesn’t want something on the television or music on he will just fuss (loudly) until it’s turned off. If he allows himself to be intrigued and actually watch something then he generally likes it but we often don’t get that far. We thought we were doing well with Muppets Christmas Carol yesterday but after about half an hour he insisted it was turned off.

We picked up some presents for him from a family member yesterday and he did really well knowing they were in the (high) cupboard until about 5pm when he mounted an expedition to try and get them out. It was both annoying and very funny. It’s so unfair to expect a young child to wait to open presents really. What he doesn’t know is that there’s a stack of them in the spare room!

He is still being very difficult about walking anywhere outside. I am hoping this is a phase that passes but I can see it lasting all winter. I am quite worried, it’s just not healthy and he’s going to end up so weak and unfit if he doesn’t get any proper daily exercise. I need to try and somehow incentivise daily progress (from a low base) after Christmas is over.

So far so peaceful here. We are gearing up for our annual Christmas Eve tea party at my Mum's house - there will be 30 of us here in an hour and a half's time. All the food is prepped. DS is currently naked - I think getting him dressed is going to be the biggest challenge today. To be fair he is coping v well - especially as my sister and BIL were meant to be coming to stay but have had to cancel due to illness. He was so excited about seeing them and we both had a little cry when I told him that they're not coming but has bounced back.

Merry Christmas to you all

Lottie just my sense of humour. You and open thought you lived in the same town because of said event, but then realised the events where nationwide so I basically meant you are probably opposite sides of the country.

Dimples good luck for today. Good luck for getting clothes on ds.

Open ds won't walk, he's a pain in the arse. I have to carry him, I'm only 5ft 3 and he's tall. He's up to my bra or just past, it looks absolutely ridiculous lugging him about me being tiny and not to mention he kills my back.

Light are you a nervous driver driving so infrequently? I've only been driving a year so I'm not brilliant anyway but I feel nervous if I've had a week away and not used my car etc.

I had planned to take ds out today just for a walk up the beach for a couple of hours we did the same yesterday and watched the Xmas lights and he had a tray of chips, but it's gone 2pm now and he will be having his tea at 5 and his Xmas eve box and bath then bed then me and Dh are having a dominos and dragging all the presents down so there isn't much point now really, he's playing so I'll hope he keeps occupied for another hour or two, it's more hassle than it's worth taking him out.

I downloaded an Xmas Santa call app this morning, set it all up, my phone rang and I thought ds would love it... instead he picked my big Christmas angel off the sideboard and hurled it across the room and smashed it, chipped a big piece off my bannister and I've had to bin the angel took, ages to clean the glass up

Hope you all have a lovely Christmas. X

Ps - I lost another 2lb this week, so 19.5lb off in 8 weeks having tonight off for a dominos and not tracking anything tomorrow / Boxing Day then straight back on it to lose the last 2 and a half stone.

Longest I've ever stuck to a diet properly!

Well done on the weight loss danni. Sorry about the Angel.

Thanks open. Totally get the non walking thing, that's why I love the SEN buggy so much. We don't have to fight over getting places but once we are there ds can run around like a loony once we're there. Today he ran around with no shoes, coat or hat on for 2 hours in the freezing rain. He is a total loon, not sure how he hasn't caught hypothermia yet. He seems pretty relaxed now though phew!

Hope you managed to get him dressed dimples. Good luck with the party!

I finally managed to finish ds's social story. He doesn't seem that bothered about it but dd loves it (I made it about both of them). Also emailed everyone a military precision plan for tomorrow plus a series of meltdown rules (which hopefully we won't need!). So much planning required!!

Yes I am a very nervous driver Danni! Bit of a vicious circle really. I do think I'd improve if I drove more often.

Sorry about the angel.... But well done on the weight loss!!

We didn't make it to the museum in the end as OH and DS were poorly so we thought we'd conserve energy and we'll try to go between Christmas and New Year. We're all at my parents now and had an early night so hopefully everyone will be feeling better tomorrow!

Anyway, have a gorgeous Christmas all. Hope all your littles have a mainly magical day!!

Merry Christmas everyone. I hope you have a wonderful day.