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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
Mumofsend · 25/01/2022 11:10

@carriebradshawwithlessshoes

I’m interested in adhd comments as hopefully next week we may be able to start!! Danni, I know your DS has reacted badly to the slow release… do they say this is normal? I’ve drilled them for side effects and aside from the lower appetite they say absolutely none, no mood issues or whatever… just all positives! Maybe they are spinning me a yarn, maybe we just have to try it?

Re the melatonin, sorry if I’ve missed this upthread but why can’t be take cirdardin slow release? I’m not sure of the other med you mention but circadin slow release I think is the common slow release one. I know open has this too? You do have to get them to swallow whole but for us this is the one that keeps him asleep (usually not always.) if his sleep is such an issue I would have thought the drs would have given a slow release one? Maybe even alongside the other med?

Anyway hope sleep is better and those with Covid aren’t too poorly

We were told very clearly that if a child also is anxious then often stimulant meds can make the anxiety ten times worse.

@danni0509 I didn't catch the name of it, DD was doing a runner Blush

openupmyeagereyes · 25/01/2022 15:59

Ds was in this afternoon and the TA said he’d been great. So relieved. I’ve been anxious all morning, it’s just like when he first started school. Tomorrow he’s due in first thing. He’s not talking about it, except to say he had fun. Typical for him.

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MagratLancre · 25/01/2022 16:03

So pleased for you all @openupmyeagereyes!

dimples76 · 25/01/2022 16:57

What a great start Open!

danni0509 · 25/01/2022 17:01

Ds hasn’t had a very good start to his week at school, his teacher had to phone me when ds left.

He’s hurt staff both days, today trashed the classroom and hit some of the other children.

Ds was trying to force feed one of the children food at lunch, he wouldn’t stop trying to put food into her mouth despite his warnings so the staff were trying to stop him and remove him from the situation, and because of the commotion another boy who his teacher said is noise sensitive, ds had agitated him with all his screaming, ds knocked this boys lunch onto the floor so this boy who was already wound up jumped up and hit ds and then my ds lost the plot and trashed the place and that’s when he hurt the staff and other children.

He’s had a bad taxi ride back and they couldn’t throw him at me any quicker which is disappointing as they are usually fine regarding tricky times and don’t bat an eye but they looked like they’d had enough today. Just basically chucked ds and his bags at me said bad day don’t ask and drove off! Wtf.

Ds teacher said today that ds is a very tricky young man to work with, and even when things are going well for him on his ‘calmer’ days the staff are struggling because of how full on ds is and he’s having to be changed hands once an hour, more for the staffs benefit of a breather, and then when times are bad such as yesterday and today and any other day it goes to shit, he’s needing several members of staff to manage him and they have to call in the pastoral team to come down and all the support has to be directed at ds to get through whatever crisis. Usually a crisis which has arose from nowhere. So I said, ok that’s good to know that specialists are finding it difficult because it’s not just me struggling to manage him then. And he said the staff have all discussed before they don’t know how I manage him full time at home, they said they have training monthly and have years of experience working in specialist schools and they all find it difficult with ds. Honestly sounds daft but it makes me feel less of a shit parent to know that! Often wonder if I’m just rubbish at being an SEN parent and I’m burnt out or whatever because I sometimes feel so stressed and don’t know what I should do or even if I can continue doing it long term.

Can you imagine though, right ds ive had you an hour, now someone else has to have you for an hour because I need a breather Grin

I feel so sorry for ds today, he has come in from his taxi and he was shaking with his fingers in his ears I asked what happened, he wouldn’t let me take his fingers from his ears, I eventually managed to prise his hands off his head and he said the phone rang in the taxi (he HATES it) I said what happened next and he said they turned the phone off but he hit her (PA) loads of times, (not great ds) but it’s proper stressed him out as he was trembling inside the house, I could visibly see his legs shaking Sad (just from somebody’s phone ringing) so that will explain the bad ride back.

He’s been anxious all afternoon checking with me every 5 seconds my phone isn’t going to ring (it’s on silent when he’s home)

Ahhh new day tomorrow ds! We can live in hope 😭

danni0509 · 25/01/2022 17:02

Great news open I’m so pleased for you! Long may it continue!!! Smile

openupmyeagereyes · 25/01/2022 19:03

danni you're not a shit parent but I'm sure you are burnt out and stressed. I'm glad that those comments have validated you. It sounds like all ds' buttons have been pushed today and he's just lost it. Do you think this is the increase in medication or just a bad day?

Thanks for the good wishes everyone. I really want everything to stay positive but I know we've been here before where things have gone ok for the first couple of days, or weeks even, and then turned downhill. I just don't want to get my hopes up too soon.

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danni0509 · 25/01/2022 19:22

I just can never understand why he can’t be controlled open strategy after strategy tried and failed so I think wtf am I doing wrong, so it’s that which is what makes me feel better because not much is working at ds school and they have all sorts up their sleeves, and have had a hell of a lot more training than I have. I told him today ds fries my brain and he laughed and said yes I know exactly what you mean 🤣

It could of just been a bad day but then he’s had more medication since last Thursday too, so I’ll have to see what happens for the rest of the week / next week, but it’s the pattern of one step forwards two steps back as always.

Is your ds attending every day this week? I hope he settles in and you can put all this school refusal in the past x

openupmyeagereyes · 25/01/2022 20:03

He’s supposed to be, danni. We’re going to try mornings to start with. Then I worry that he’s missing the after lunch play time, which I know he’d enjoy. I think we’ll see how the first few days go.

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Mumofsend · 25/01/2022 20:44

@danni0509 I fully get where you are coming from.

It is almost a relief sometimes DD is exactly the same at home and school, it isn't just me doing something wrong.

I so worry re DS as he is angelic at school compared to home that maybe he is actually me

carriebradshawwithlessshoes · 25/01/2022 22:30

Thanks for the video links Danni I will watch.

Is it worth talking to CAMHS about the other med you mentioned that we discussed (sorry, name gone out of my head.) On my other thread the poster talked about the hitting and so on which this DID control and stop. Worth a try??

Sounding good Open!

openupmyeagereyes · 26/01/2022 08:29

And it’s started. I just want to cry. Didn’t want to go, undid his seatbelt on the way up the road and I had to turn around and come home. I just knew it.

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livpotter · 26/01/2022 10:21

I'm so sorry open. Are the school being supportive? I hope they have some suggestions and are helping you to encourage him in.

Danni that sounded like a really tough day for all involved. Was ds ok today?

Sorry I've been a bit quiet. Just so busy and so much going on. I have been reading along so hope everyone is ok and all the people with covid are feeling alright!

danni0509 · 26/01/2022 10:32

Oh no open how utterly disappointing for you! I’m so sorry. How stressful Sad really don’t know what the answers are Flowers

liv I’ve been wondering how you are. Ds has gone ok this morning, he said to his teddy (his best mate, he takes it in the taxi, but not into school they won’t let it into school!) we aren’t going to school today and I thought oh for fuck sake don’t start with this! But ive got him in the taxi and I just hope he has a better day for everyone’s sake.

Mumofsend · 26/01/2022 10:55

@openupmyeagereyes

And it’s started. I just want to cry. Didn’t want to go, undid his seatbelt on the way up the road and I had to turn around and come home. I just knew it.
I'm sorry :( hope it's just a blip and school are supportive
openupmyeagereyes · 26/01/2022 11:18

Someone called briefly this morning, they said they would get the teacher to call so I'm waiting to hear from him. I'm going to try and get him in just for lunch and playtime, I'll wait around and then take him to my mum's which we'd planned to do after school.

We've had meltdowns this morning about the TV and just his general anxiety. He said that he's scared because he doesn't know anybody, which I totally understand. Then it quickly turned into I hate school, it's rubbish etc. which is what we used to get all the time.

I need to discuss with them but I feel it's best to start with lunchtime, then the hour after lunch and then work backwards getting him in earlier in the morning. He needs something fun to draw him in to start with while he settles into the place.

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dimples76 · 26/01/2022 14:44

Sorry to read that Open, fingers crossed that your plan of working back to an earlier start works better.

Danni sorry that your DS had such a difficult day yesterday but good that others have reassured you it's definitely not you - you are incredible.

DS presents school with far less challenges than he does with me at home - at school there are no longer any toileting accidents, he is not aggressive to anyone, he doesn't scream and is generally fairly compliant. It does make me wonder what I could be doing differently, especially as he started pulling his hair out again at Christmas and a bald patch has appeared during our isolation. Although we escaped isolation today and DS returned to school I am feeling pretty low today. I worry that I am letting DS down, I'm miles behind at work, I'm missing my Granny and worried about how to prepare for the tribunal.

LightTripper · 26/01/2022 15:29

Obviously we have a less intense time of things, but I definitely recognise the pattern of fine at school but less at home @dimples76. DD's is mainly anxiety - at the moment it manifests in collecting lots of things to make her feel safe. At night she'll come down and start circling the house picking things up to take up to her room. It's trickier for school where I don't want her to stuff her bag with things from home that she could lose at school. It started just before she went back from Covid. I'm hoping it's just temporary while she settles back in, as it definitely stops her getting enough sleep.

It feels like when your kid's anxiety is low enough to allow them to get to school, they definitely pay a bit for that with extra anxiety at home.

Still, I hope DS does manage to get into the swing of things at his new school @openupmyeagereyes. It is a lot for him to adjust to. Your plan of starting with lunch and then working backwards sounds a good one to me to get him settled - I hope school agree (or have an equally good alternative plan!)

@danni0509 you're not a shit parent AT ALL. It's clearly very tricky and you do such a good job standing up for DS and trying to help him navigate everything.

danni0509 · 26/01/2022 15:39

dimples I’m not suprised you’re stressed, you have loads on your plate, juggling it all whilst being a single WORKING parent of two kids! You do amazing with it all!!! I hope when your back in the routine of school / nursery again you can start to catch up a bit with your work.

open did school ring with any suggestions?

I’ve bought some post it notes today, so simple, but I’m sick of ds bending all his laminated now and next boards / pictures and sometimes what we are doing isn’t available in a picture even though we have hundreds of cards. Or the wording isn’t right, tablet instead of iPad doesn’t work with ds, a tablet is what you swallow iyswim. They are shoved in the kitchen draw and I get them out from time to time and make an effort for a short time, but not nearly as often as I should. The post it note thing I’ve read before but reminded me again from that Dr Russell Barkley I mentioned. He talks about it on one of his videos.

Doesn’t matter if ds bends it or rips it, it’s a bit of paper and goes in the bin anyway. So I’m just going to write simple instructions on them. Lists. Now / next. Step by step instructions to dress himself or whatever we need to break down. One to stick over his mouth when he’s gobbing it. Two to stick over his eyes when he won’t go to sleep. Whatever I need them for really. 😂

Ds was ok in the taxi today. School was a bit hit and miss but better than yesterday for sure.

danni0509 · 26/01/2022 15:41

Sorry cross posted light are you all ok from COVID?

livpotter · 26/01/2022 16:30

Dimples like danni says you have so much going on I'm not surprised you're feeling a bit overwhelmed! Plus covid took away your additional support network. You must be knackered!

Ds's behaviour is similar at home/school but he saves the mega meltdowns and violent behaviour for home. It's definitely a case of us being his safe space and I would guess it's similar for others too.

Glad ds had a better day danni. Post its sound like a good idea.

Light when ds wanted to take everything into school with him, I used to print and laminate pictures of them. That way it didn't matter if they got lost at school. Hopefully dd will settle back into things soon.

Ds has gone from having his security toys in his school bag and not wanting to go anywhere without them. To adamantly not wanting anything in his bag in case someone sees them. I always wonder what prompts these changes of heart but I guess I'll never know. Ds definitely can't explain it to me now maybe he will when he's older.

livpotter · 26/01/2022 16:30

Open hope the rest of the day went ok!

carriebradshawwithlessshoes · 26/01/2022 21:36

Open, I read your update this morning and was thinking about you on the drive in to work. How did it go? I think your suggestion was a really good one. I think it is a long game with school, he’s not been for a while and will most probably take some time to get in to a pattern during which there will be some downs as well as I’m sure lots of ups! The only thing I did think of which you may dismiss is if he continues to be anxious/ worried etc would he talk to anyone externally, like I guess some sort of CBT? I’ve heard that it can do amazing things for kids that are verbal and so on… I know you say he can’t sometimes explain to you but these are trained professionals who work with children with all sorts of anxieties and some mums say it can really turn a situation around as they can really tap into their child. I would assume CAHMS can refer or of course I’m sure there are private options.

Dimples, I often think I don’t know how you cope so well! Hopefully the children can get back to school and routine resume. Try not to worry in the meantime, work will be there to catch up with when you are able. It sounds like your gran was central to your family, you will miss her, that’s totally understandable.

Mum, lovely to hear from you glad you are back.

Glad you are ok too Liv, I was also wondering how things are.

Is it the weekend yet?! Though I’ve been in the office all day today and I can say absolutely categorically it’s a zillion times easier doing that than being at home. I feel like I’ve been on a mini break…

openupmyeagereyes · 27/01/2022 06:20

dimples I’ve had a very low day too. You have so much going on as well as grieving for your gran, it’s not surprising.

Light I’m sorry dd is anxious post covid, hopefully it settles down soon.

liv good to hear from you.

carrie I would absolutely try CBT if I could find someone locally who could do in person (no point trying online) and had experience with autistic kids. I’d try almost anything at this point I think.

I’ve moved into problem solving mode after feeling very sorry for myself most of yesterday, very sad too for ds of course. Trying to tell myself it’s early days but also worried we’ll end up losing this opportunity. There must be so many kids needing a place in a school like this. School aside (and I know the anxiety about school is integral to this), the tantrums are very hard, more what he says than what he does though that’s not pleasant either. I don’t think he means what he says but it’s still hard to hear. Never did I think I’d be dealing with such things as a parent. I thought I’d be the firm but kind mum. Man plans… as they say.

Anyway, his teacher called late afternoon and should call me again today after discussing the reduced timetable with his line managers. He said there were a couple of others struggling so we weren’t the only ones. I’ll try and get him in for lunchtime again today. If I can get him in today or tomorrow that would be a win.

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carriebradshawwithlessshoes · 27/01/2022 09:02

Totally meant to say then didn’t could you stay with him Open, at least for now? Would that help???