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Primary school auties step into Christmas and the New Year - thread 8

999 replies

openupmyeagereyes · 09/12/2021 13:45

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old 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

Thread 4 - www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 5 - www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6 - www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Thread 7 -
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

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Thread gallery
6
MagratLancre · 08/01/2022 16:13

I love zoning out too! I find it harder these days. I am very short sighted and I like taking my glasses off so the world is blurry and zoning out for a bit. I like making up stories so I just zone out with my characters ha!

danni0509 · 08/01/2022 17:07

I'm short sighted with glasses too magrat can't see passed the end of my nose without them on.

dimples76 · 08/01/2022 17:20

I am a terrible one for daydreaming but I think that I'm always thinking about something.

Danni DS is still on waiting list for SCAT assessment. I failed to get him on the list for ADHD too. CAMHS said that he would not be assessed until Summer this year at the earliest. In the past my requests for assessment were all knocked back on the basis that his sensory issues could stem from developmental trauma or that he is too sociable. He does actively seek out a lot of social interactions but his social skills are poor, he struggles to have reciprocal conversations, playing with other kids etc. We shall see! Personally I think it is probably a combination of DT, ASD, ADHD & DCD

I do think that it is epilepsy now because of the eyes. I am so glad my sister has observed it too now. As I asked his 1:1 to watch out for it and she hasn't seen them (and she seems v diligent). Carrie I will message you

Open we have stairgates top and bottom at home but unfortunately DS can open them. I was thinking maybe I could add a bike chain...possibly OTT

openupmyeagereyes · 09/01/2022 17:51

For tomorrow:
52 small changes get 7-8 hours of restful sleep each night. We knew it was coming sometime...
52 small changes for the mind make time for music each day.

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danni0509 · 09/01/2022 18:46

52 small that's never happening it should say open 😂

Have I said before my 9 month old nephew sleeps more than my 8 year old child?! Haha. Ffs.

openupmyeagereyes · 09/01/2022 19:20

You did danni, it must sting. Ds was up about 5/6 times a night often at that age.

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carriebradshawwithlessshoes · 09/01/2022 19:24

Mine are fighting over a new potato. DS swiped off DDs plate. DD is never forgiving him apparently.

Driving me insane…..how can I do 52 positive changes??? 😬😬😬

openupmyeagereyes · 09/01/2022 19:25

carrie Wine

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dimples76 · 09/01/2022 19:53

Well I am lucky that both my children sleep pretty well now but unfortunately they're both in my room, in DD's case in my bed. My aim this month is to get them back to their rooms... I am a terrible sleeper so it's often me disturbing them as I often need the toilet when waking in the night. The music one is already sorted as I listen to music a lot. Unfortunately DS is the main DJ here - with his favourite songs he doesn't let them end before he asks Alexa to repeat them.

openupmyeagereyes · 09/01/2022 20:09

Oh dimples we get a lot of ‘Alexa repeat this song’! Grin

I’m pretty good with music too though better some days than others. Sometimes I listen to music in the kitchen, sometimes a podcast or audiobook. You could try a new genre or artist. Experiment a bit.

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carriebradshawwithlessshoes · 09/01/2022 20:24

Open I’m sorry I have to ask… do you you love Mr Brightside/ the Killers?? 😃😃😃

carriebradshawwithlessshoes · 09/01/2022 20:25

This user name business isn’t easy!!

openupmyeagereyes · 09/01/2022 20:33

Yes, of course! Saw them at Wembley when pg with ds.

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danni0509 · 10/01/2022 08:34

Open I had a sleep course booked for this week, I booked it after I received the details on a SEND newsletter.

The course provider phoned me, she was really patronising. Gave me a rundown of the course contents which consisted of, how we produce melatonin and how to naturally increase production. How to set up a good bedtime routine & how to break bad bedtime habits. All I said was what happens then if you've tried all that? She was like, well you don't have to do it, this course is free of charge etc etc. I was just asking her a genuine question, senior sleep practitioner that she was an all that. Confused

If the strategies didn't work that were discussed during the course, you had to do a months long sleep diary and you were assigned a 1-1 sleep practitioner for that 1 month.

After that if no improvement they would refer you for a prescription for..... melatonin (which ds has been on for 3 years Hmm)

I cancelled my place.

It was 2 hours, 1 day a week for 3 weeks.

Bit of a waste of time considering ds is on 2 sleep meds and we've tried all the above for years.

I wasn't being a know it all, just genuinely wanted to know that for 3 weeks I wouldn't be wasting my time!

openupmyeagereyes · 10/01/2022 08:51

danni you should see if your paed can get you into a sleep clinic. They’d find out what was going on. Did you say your ds had sleep apnea?

Ds awake since 3 here despite the slow release melatonin. He did stay in his bed with me until 4 before he insisted on getting up. I went back to bed at that point as dh got up with him. Woken a couple of hours later by him having a tantrum over his game. That’s one of the reasons giving him unfettered access to it wouldn’t eliminate issues. He gets very wound up when he can’t do what he wants in it.

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dimples76 · 10/01/2022 08:54

That course does sound pretty pointless Danni! I had that sort of thing with NHS OT - 'we don't provide advice re sensory issues but you can do the Sensory Smart Parenting course'. I said that I had already done it and she said that I could do it again. I asked if it had changed much in recent times and she said not but after I completed the online version I could have 1:1 phone call with OT re DS's sensory issues. In the end I pretended to have watched them to get an appointment. Still waiting for the appointment though.

Open good idea. I am going to listen to classical music

openupmyeagereyes · 10/01/2022 09:06

I love to have classical on in the background, so relaxing. I might try some French cafe/Jazz type if I can find something good.

Music recommendations welcomed. This seems like a fairly easy one.

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carriebradshawwithlessshoes · 10/01/2022 09:49

Danni that’s ridiculous. As a general point I’ve found across the board with DS that most ‘professionals’ don’t like to be questioned on things. I find it mad as I’m questioned all day and expect to be. But they are right and if DC doesn’t fit the box then tough. There’s no thinking outside it. I’m also amazed at how rude some people are… I actually did a post on this before Xmas!! I absolutely would not dream of speaking to a client or colleague or contact in the way some people seem to think it’s ok to talk. It’s beyond me.

Open, gosh that’s early. Does DH manage work etc getting up at that time? I only ask because if we are having issues with DS and sleep there’s a big battle always with DH who says he can’t do his job (which is obviously the main one) on no/ poor sleep and it’s his job which pays the mortgage! It’s a frequent argument.

Obviously everyone has different views on how much sleep they need/ how much they are prepared to medicate their child but I’d really struggle with such an early start and I know DH wouldn’t get up at that time. I’d try a later time to give him it but firstly increasing the amount. Danni doesn’t your DS take 5mg? DS takes 3 but we increase to 4 during bad spells. 2 is quite low. It may make a significant difference (if you feel you need it to.)

openupmyeagereyes · 10/01/2022 10:17

carrie I may talk to the GP about giving him more, I’ll see. I didn’t restart it for trying to get him to sleep through as I know that doesn’t work but he is going to sleep earlier which is what I was hoping for. He doesn’t wake later if he goes to sleep later.

We manage because we have to, same as anyone else. I don’t think it would be very good for our relationship if dh refused to do early mornings because he works. Better for us both to be a bit tired than him to be fine and me a wreck. We manage by going to bed early - we get ready to head up at 9:30 - and taking turns. This means overall we get an average of 6.5 hrs ish which is manageable I think. He doesn’t wake this early every day thankfully though we do have bad phases.

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openupmyeagereyes · 10/01/2022 16:15

Ds wanted to go out on his bike this morning and this afternoon we went round to my parent's house. I'm hoping we're over the not-wanting-to-leave-the-house phase!

I hope school has been ok for everyone.

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danni0509 · 10/01/2022 17:12

Oh that's good open I'm pleased he left the house. Hopefully that will help to break the cycle of him wanting to be in all the time.

Can ds ride his bike ok? Ds can't, he did learn for a bit a couple of years ago, took ages (years) to teach him the pedals. His coordination isn't very good so he kept falling off, ramming into people on the park, driving straight towards them on purpose, going too fast and I just couldn't keep up, so it's been in the shed ever since. He can't ride a 2 wheeled scooter either, only the mini micro type ones with 3 (or it might be 4) wheels.

I don't like him riding his scooter either (he's outgrown it now anyway) as he speeds up on purpose and goes so fast I can't get to him, he once scootered off fast down somebody's long drive and tried to get into the feature pond and gave himself an egg on his head from the wall he head butted. Suppose I should try again with these things but it's such an effort to keep him safe whilst doing it all and he won't stay by my side which means we can't take them out (sigh)

Ds had a mixed morning at school, they sent an email, he kept crying, not v happy as he couldn't do what he wanted to do. He tripped on a pupils leg and banged his head on a table they said, but ds version of events was a pupil kicked him and he fell and banged his head. He does exaggerate a lot though.

He's been ok this afternoon, although on his iPad most of it. He's found a game he likes and he's glued to it. (I'm not complaining!)

openupmyeagereyes · 10/01/2022 18:37

danni he's had this bike three years now and it still has stabilisers on it, he will need a new one really. He's had very little interest in it until now, we would take it out and he'd do a couple of minutes on it and that's it. This holiday he's showing more interest and will cycle down to a local park and up and down the paths around it. I had to wheel it back today though. Same with his scooter really. We've just got him a two wheeled one and he's starting to go up and down the hall on that, he was a bit nervous at first. I'm a bit scared of him being too fast for me but he has to learn these skills I think.

I hope ds has a better day at school tomorrow.

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LightTripper · 11/01/2022 12:49

Hello all! Sorry I've not been on since before Christmas - so much to catch up on! We're well. Christmas and NY went surprisingly well. Kids only back at school today. Last week was trickier. DD was having trouble sleeping - saying she had a "big worry" but didn't know what it was, and not falling asleep until after 10pm and some days closer to midnight. Weirdly I think going back to school may have helped as we had a good day yesterday (inset day), and she was asleep by 9pm. I probably just need to get them up earlier in the holidays to keep more of a routine and tire them out more but I am SO not a morning person and sometimes I just want to be at home getting on with things I need to do, so probably don't wear them out enough. Need to just be less lazy!

We introduced them both to Minecraft which is a new obsession but really nice actually. I've been impressed how much they've played together on it (with a tablet each, so they can do their own thing). They've been building a zoo together and playing hide and seek even and all sorts! Quite a lot of arguments too obvs...

Welcome to the thread @CallHimMrRaider! It does sound like DS is probably masking. Don't feel guilty - it's so hard when everybody is exhausted and very hard to balance needs with siblings. I'm always glad DS is a younger sibling as actually he and DD have quite similar needs in a way and it means her need to be in control is easier to meet. I suspect she would struggle a lot more if she had an older sibling instead of a younger one. Your job sounds both amazing and frustrating: it must be so hard to know what you could achieve if you had the proper resources, but I hope you know we're all very grateful to you for doing what you can with the resources you're given.

@livpotter your roulade looked amazing! OH and I would very happily not bother with parents but it feels a bit awkward with other people's expectations if we do nothing, so we try to think of a couple of things we need/would like each and just ask each other for them. Having said that OH still hasn't decided exactly what he wants so he got socks and a multi-meter to open on the big day Grin - exciting!

@dimples76 I'm so sorry about your Grandma - hope your Mum is doing OK now. 100 is a great age but it's never easy to say goodbye to anyone, even if they are ready to go. The stairs shove sounds scary but does sound like it was an impulsive reaction, not meant. It does put a lot on your plate re: safety though, I can see. The doorstep show with cousins sounded super-cute though!

@danni0509 glad DS had such a great first week back! DD has also never been star of the week and is a bit crushed every week. Although her class has nearly 20, so I try to explain that nearly half the kids also haven't been star of the week yet. I'm hoping they are doing it on rotation so they will get to her by Easter - if not I'm going to have to come up with another explanation or talk to school to understand how it works! We never had star of the week in DD's old school. I can't say I like it very much. Great that DS tried a mince pie too - it's lovely when they find something new they like. Sorry about your PIL's gift: your client's gift sounds lovely though - so thoughtful - DD would have loved those! We aren't so constrained I guess but I definitely do still miss some things from pre-kids. Just the lack of obligation and time to myself really - though I'm occasionally getting some now (which I used to tile a splashback for the utility room sink before Christmas - I know how to live!)

@openupmyeagereyes - so sorry about the new school delay. Are they going to send any activities or anything else to keep DS occupied, or are you just waiting for 2 weeks? I realise it's very late but if you don't mind cross-over somewhat "kid" books I really like the Matt Haig Christmas books. We did The Girl Who Saved Christmas last year with DD and DS and we all really enjoyed it! This year we've got Father Christmas and Me. Haven't actually done the first in the series yet (A Boy Called Christmas) but will have to get that next year. We've really enjoyed all the Matt Haig book's we've read. The Truth Pixie, To Be a Cat and Evie and the Animals are really good too. I think he does adult books too but have never tried those - but I'm willing to bet they'd be good.

@MagratLancre DD lost 4 teeth over the holidays! She' hasn't lost any so far so it's a new experience and she's very glad to have finally lost them and catch up a bit with her peers. She has a cute lisp and a new found method for eating chips Grin. Sorry the publishing thing turned out to be a damp squib. Hope something better comes along. What kind of thing have you written?

@carriebradshawwithlessshoes it must be difficult balancing DS's disinterest in Christmas with DD's needs. Have you read about monotropism (Dinah Murray I think was the original proponent of the idea as a kind of partial theory of autism - I find it quite convincing but not complete)? Maybe he is just focused on people rather than things as you say (just shows how wrong the stereotypes can be!) A lot of his engagement seems around meeting sensory needs maybe with swimming and moving - but then that doesn't really explain the panto and enjoying family time so there must be something social/people related in there. There is a YouTuber called "Aspergers from the Inside" or something like that whose special interest is people and psychology - maybe DS will be something like that? Does he like books - you could try him on some of the old Desmond Morris books on people-watching? Or maybe something for his swimming, or stuff to play with in the Woods (a survival kit or binoculars or something like that)? Anyway, you've probably thought of all this and he's just disinterested in stuff so I will shut up now! DD completely loves being in the woods too. Luckily DS enjoys it too (again, him being younger is really helpful I think).

Sorry if I missed anyone else but Happy New Year to all!!

LightTripper · 11/01/2022 12:49

@livpotter that should have been presents, not parents!

MagratLancre · 11/01/2022 16:48

Happy New Year @LightTripper!
I've written a children's book aimed at 6 to 8 Year olds. Really happy with it and would love to have it published properly. I blog and review a lot of books so I know how competitive it is though!!