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

[openupmyeagereyes]

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

I hope he sleeps well tonight open and you can catch up yourself.

Ds has just sat on his bed for a few minutes and wet it right after he told me he didn't need the toilet. Cannot be arsed with wash baskets full of sheets and blankets, the whole lot needed to come off and needed remaking and frankly I don't have the energy. I put clean pants on him and he's wet them too. I've needed to stretch my patience today as he's been really testing it by hitting us and being destructive in the house.

We did manage an hour and a halfs walk though were ds found an empty plastic bottle and spent half an hour sat ripping grass up and filling the bottle with it which kept him quite for a bit. Until he found some long yellow grass that he thought was wheat (it did look like it to be fair) and had a tantrum because he wanted to bring a handful home to make bread lol.

Roll on Tuesday, few hours respite! Frazzled 😅

Urgh danni how frustrating.

We had a better night thankfully. He was up at 5 but my turn for a lie in. I can’t always get back to sleep but today I did.

It’s a bit tricky getting ds out of the house at the moment. Quite a contrast with the daily demands to go ‘somewhere exciting’ over summer and autumn.

Open Ds can't accept going for a 'walk' it has to be a named place. Yesterday we went for our walk but he wanted to know exactly where it was we were going, he knows all the places too so wants the exact name, of course we didn't plan to go anywhere specific, just for a walk, so I told him not a place, a walk, and he goes mad. I take bread for the birds and say ds we will feed the birds. Nope not good enough, a place to him is somewhere which usually costs £

He wants soft play where he batters all the kids so we don't go often or the arcades were we spend £20 to win a refresher bar and he wants every single ride we pass etc etc it's difficult because I don't always have the money to 'do things' or the energy / sanity to manage a day out with ds.

He also has an ingrained routine of going for a drive in my car, 365 days a year. Never get a day off, Xmas day we went in our pyjamas. Same route, takes 20 minutes. He cannot cope if we don't do it, so I use petrol every day for the sake of it. I put £100 a month sometimes more in fuel and I don't even take ds to school

Kids!! Haha.

Open I'm pleased ds had a better night for you x

So sorry dimples I hope you are ok.

Carrie it's a tricky decision, have you seen them both in person? I felt that was the thing that made the decision for me.

Danni ds found some 'wheat' once too. Dh ground it in a pestle and mortar and when ds wasn't looking replaced it with flour . ds was very excited by this!

Glad you had a better night open. I feel for you as ds has been getting us up at about 4am every morning since the day before Christmas. Hoping this is a short phase.

I'm very grateful for this thread too! It's kept me going many times.

I'm starting to get anxious about the kids going back to school. Ds is going to be very annoyed after all this freedom and change. I'm certain there will be some hiccups with transport too, even though they've agreed to the new address. Oh well a couple more days left.

Liv, I have seen the speech unit. I have not seen the SS as they were only doing a virtual open day so I’ve not had a chance to properly look/ talk to them.

I think I need to see what’s offered then have a thorough discussion and re visit with who over offers. Almost a second interview!

AIBU to say the SS should let me visit or are they being reasonable to say no cos of Covid do you think?????

Danni I think cos we are about to embark on the adhd journey too m interested in what you and your DH think. Have you said to CAHMS that you think he is no better or worse and asked them if this is to be expected? If so what do they say? I guess there’s only 2 responses… 1. Sorry, it doesn’t work for all kids or 2. This isn’t right, we need to amend what he is taking in some way. I’m preparing myself!!!!!!!!!!!

Carrie ds school wouldn't let me visit either, ds wasn't allowed any transition days,
so he started there on the 17th may having not met any of the staff or not having visited the school, he only left his mainstream on the 14th, so he had a weekend off and went straight to his special school on the Monday. I can't remember if you posted back then? It was a shit show and I moaned no end on here. But in answer to your question, no I don't think it's reasonable to not let the parents visit, it's utterly ridiculous.

Carrie CAMHS get quite a lot of shit off parents but I can't speak badly of them so far, other than leaving ds on a waiting list for 17 months with severe adhd - that's my only issue. But we are seen monthly now.

They don't like to give medication unless necessary, ds consultant told me special schools often push for more drugs and he wouldn't be increasing ds medication anymore until he's on full time hours. He's currently on 5mg 3 x day now (somebody I know with a teenager is on that dose, so I don't think ds is on a small dose considering he's only 8 this month)

I'm not sure what behaviour is ds adhd or what's his autism to he honest, he's always been hyperactive and impulsive even as a toddler and they say adhd presents around 4. Ds was like it way way before then, I used to post on another forum before here and I posted when he was 2 that I was sure he had adhd, so I sometimes think is a lot just his autism presentation?! Because he's been like this from really young, but then he's nothing like any other autistic kid I know, or know of. But then his teacher with 20 years experience in special schools says to me ds adhd is really severe. So is he not on the right medication for it, I don't know.

All I know is I don't medicate him on a weekend (as to me it's pointless when there is no difference in him) and he's just the same as though it's mon-fri when he is medicated. You wouldn't be able to tell the difference at all. School say he concentrates on his work tasks a bit more so they think it's beneficial for that purpose.

Mind field!

Had a rough afternoon with Ds being aggressive. He nearly took my jaw off with his iPad at tea time, chucked it straight at my face like a frisbee (he did the same to dh head last week with a giant sand timer, how we've still got our front teeth I'll never know!!)

He kicked me in the back really hard when I was sat on the sofa sandwiching him in trying to calm him down and stop him ripping at my hair and he kicked me in the top part of my back really hard, I don't know what he's done to my back but every time I breathe in I'm in absolute agony, I was actually sick in the toilet, from stress I think, not the first time I've been sick after sorting his meltdowns out. I sat on the sofa when he went to sleep at 9 and cried my eyes out and now my heads banging from crying. 😅 I should go to bed but I'm enjoying a bit of calm silence.

Nothing specific set him off, he was sat nicely on his iPad I was about to make tea and he just flipped for no reason I can possibly think of. He kept saying I'm going to make you hate me and kept hitting me. Wtf.

He's asleep now, I hope tomorrow is a better day, it's days like today I worry so much for his future!!

I've been reading about risperidone for aggression / anxiety. I'm going to talk to his consultant about it in a fortnight I think.

Plus side.

When I eventually got round to making spaghetti bolognese, I dished ds food into his bowl, ds didn't want it, of course, he doesn't want anything I make. Told me to put it in the bin etc etc

I told him (he's obsessed with asking me how many times he has eaten whichever food he's eating) that he has eaten bolognese 999 times before and if he eats it it will be the thousandth time he's eaten it.

So he ate the lot 🤣

Well danni, that’s a win. Hopefully he’ll eat it next time too. Sorry you’ve had such a rough few days. Perhaps he’ll settle down once he’s back in school and in the usual routine.

Dh tricked ds to going out in the garden yesterday. He refused to come out in the car to collect something and go to a park so I told him to tell ds there was a cat that visits us in the garden to get him out while I went by myself. Worked like a charm because he can’t get out fast enough then.

Ds slept until about 5:50 this morning which was fab. He went to sleep just after 8:30 so a good sleep for him.

carrie ds old school is still doing remote visits and so are all the special schools. It’s not ideal. I would have liked to have been able to see ds’ new school before we agreed but it was still under construction being brand new and we weren’t able to. On paper it should be perfect so that will have to do for now. I’m really looking forward to seeing it next week.

Great post from OT Butterfly on IG on kids meltdowns, seemingly going straight from 0-100. She says they aren’t at 0 to start with at this time of year, more like 50-75 or higher. A lot of the comments were mums saying they weren’t at 0 either.

Aw Danni… give it a couple of days then go to the drs if it’s not any better. Maybe a bruised rib hopefully it will get better in a day or so.

I don’t think I’m speaking out of turn to say see Imitatingdorys comments on that medication on my other thread which I started a couple of days ago (6 year old mood swings…). Didn’t want to hijack this. Her DSs improvements sound amazing.

Mad night… v v windy here, DS woke crying I thought I’d settled him off but he just kept getting in with me then stayed, all night! Awake till 5 ish just shuffling around the bed…

I know we've got some 8 year olds on this thread already and mine and opens ds's are 8 this month, but just letting you know it's from 8 you can get a CEA card for the cinema which entitles the carer to go free. You apply online and pay a £6 fee for the card.

Ds doesn't go to the cinema yet but I'll apply and get one anyway as we tried the cinema before and it was all a bit much and we left, but at least if I haven't had to pay for myself (which is the most expensive ticket) and it's only ds ticket I've purchased it's not costing the earth if we have to leave.

Carrie I'll have a read of your thread. Don't talk to me about mood swings. Ds' are horrendous. Always worse on this medication. He's like jekyl and Hyde. He's had his medication this morning and he's been starting with me all day.

I'm so thankful school is back tomorrow, even if it's only for half a day. I need to nip to town and get his birthday badge and banners etc and order him a cake when his taxi has taken him.

danni I bought a cake just before Christmas, just from Waitrose, and ordered balloons. We use the same other decorations each year. Ds not having a party again but everything else is closed, zoos, outdoor centres etc. it’s such a pain. Hoping things have calmed down so we can give him a party mid year with his new classmates.

Open I get ds a cooplands one, just a small square one with chocolate sprinkles and the picture is whichever theme he's into, last year it was a cat, this year it will be a PlayStation logo. He's had one since his first birthday, that first one was iggle piggle. The cakes are absolutely gorgeous!!! Dh said shall we get him some chocolate cupcakes from Tesco this year, no we bloody shall not! It's my tradition on ds birthday to put ds to bed, clean up and sit with a cup of tea and a huge piece of his cake!!

That sounds lovely danni, we don’t have Cooplands here. Ds doesn’t eat the cake so it’s for the rest of us really. He’ll blow out the candles though.

Tantrum about tv again here this afternoon. When he’s not on YouTube or his game he’s asking us to watch videos on our phone or for us to read entries on Fandom about his game. Not all the time but enough to drive me crazy 🙄

A big shout out for Cooplands bthday cake!! I get one every year for DS and DDs joint bthday (3 days apart.) we live in a market town and there’s one down the road. Is it a northern thing??

Jam and buttercream Carrie? They are divine!

I’ve got cake envy now!

Deffo j and b!!!!!!

I’m doing the 52 small changes and 52 small changes of mind books this year if anyone wants to join me?

Good luck to those back to school today 🤞

Thanks open that sounds really interesting, let me look… I need to do it!! 😁.

Sorry if this is long. I know I mentioned this on Christmas Day but it’s really bothering me. I was Googling stories last night which just spiralled me into more depression! It may be there’s no response really but you seem best people to ask especially as some of you have slightly older children.

I don’t feel Xmas has really been great due entirely to DS just not ‘getting’ it. Every year I hope with another year of maturity he will be different or i can do something to unlock him ‘getting’ it but he doesn’t I feel.

He likes aspects of it. I don’t feel really that he gets overwhelmed but may be wrong. He loved the panto but that could be a show any time of year. He’s happy to socialise, to go out, to eat nice food. But that could happen any day, he just doesn’t ‘get’ the excitement and anticipation of Santa and really couldn’t care less about presents. He doesn’t feel any of the excitement of doing the school play with others, he just doesn’t get what they are doing or why it’s fun or what the point is.

Fun is swimming. Fun is running. Fun is climbing. What is fun about standing in a room of children who are talking about something he doesn’t really ‘get’?

The next thing at school will be Easter and making Easter hats and Easter bloody bunnies and we will be here again. He will have no interest in that. He won’t ‘get’ it.

I kind of see where he is coming from, he has no interest in toys so why would he be interested in gifts. He doesn’t like sitting down so why would he sit to open things he isn’t interested in? What is the excitement of the Easter bunny when he eats chocolate 365 days a year anyway??

He was in a tolerant mood last night so I sat down with him with his communication cards and he told me he knew it had been Christmas, about what we had done and what his main present was (a bike and he liked it.) he told me correctly about family stuff we had done and said he didn’t want to go back to school as he preferred it at home with me. So maybe he DOES understand, but the reaction isn’t there? If that makes sense?

I said upthread he has no imagination but I don’t think he has any real inquisitiveness either. A Salt asked me when he was 2 if he walked into a room and there was a large mysterious box there what would happen? I’d say now, he would walk around it or possibly climb on it but there would be no wow!!! What’s this??! What’s in here? Is it for me? By accident he even caught a glimpse of his wrapped Xmas presents before Xmas and he didn’t react at all to them, just carried on.

Could a SS do anything different to ignite some sense of excitement in him or anticipation or is this it? Do you think children can change or is this it? Can there be any intervention for this sort of thing or shouldn’t I be trying to try?! You all talk about things like Attention Autism, are there strategies that can be helpful in piquing that excitement and interest?

The other thing that really worries me is that they say inquisitiveness is so closely linked to cognition and intelligence. Is his reaction to things like Christmas a reflection of how bright he really is (or isn’t.)

Sorry to go on. I just find it really sad especially when I’ve got DD literally buzzing with excitement for 2 weeks snd in the run up.

Open I'll look at the 52 small changes. I always have new year resolutions / look to change my ways / habits.

Carrie your ds sounds like he understands quite a lot, he just can't communicate it verbally to you bless him.