Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Open ds has done my head in sleep wise on this holiday. Not going to sleep until midnight and up about 6am.

I wouldn’t mind but I did a Laura Plummer and smuggled phenergan and melatonin in the case (had no letters for those) although they have prescription labels on so thought if they stop me then I can just show his name on the bottles and if they take them off me then so be it.

Might aswell not have bothered.

Also I hate sharing a room with him, he’s so noise sensitive it’s ridiculous and me and dh breathing he’s having such a kick off because we are ‘making too much noise’ one night he woke about 10 times screaming because we were breathing. If we come back to the room for an hours iPad he just kicks off at us ‘breathing’ really winds me up!

We go home today, well we are being picked up at 6pm. We land back to Manchester 1am tomorrow. Then 2 and a half hours home.

My holiday hasn’t been a complete disaster, he’s been ok at various points, but he’s the only 8 year old tantrumming every time he doesn’t get his own way, and he’s only eaten toast at breakfast and Oreo biscuits all day (hasn’t eaten anything else at all) he’s now really constipated aswell and has been having stomach ache, so I’m glad to be getting home. And more importantly glad to be getting him back to school on Monday!

So basically Cutting a long story short. Ds day and night in the same room for the last week has done me in. I only cope with him when I can have time away to recharge, he’s such a responsibility and to not have any time away from it at all really takes it toll.

So yes I’m looking forward to him going back in his own bedroom and back to school and me being able to breathe without him kicking off 😩😂 x

Just incase it’s useful for anyone regarding child’s medications on holiday, I took ds anti anxiety and adhd meds both liquid form, I got that letter from CAMHS but security at Manchester didn’t even want to see it. I went to get it out my bag and he just said no it’s fine. He scanned them and that was that, didn’t require any proof and it didn’t count towards your 100ml as it’s exempt if it’s medication.

Hey Danni, I think that sounds like in parts it’s been a success… tbh no hol is 100 pc a success with any kids! I’m writing this once again on a long drive to south Devon but we are going for 2 weeks this time and hoping to catch this heatwave. I do think all in same room is quite hard for anyone, maybe next time have a look at other options, an apartment affiliated to hotel, interconnecting rooms?? Obv all dependent on cost I get that. Or even one of these arrangements where they have a lounge with pull out bed and then the bedroom?? Some are no more expensive than a normal room…

it’s always nice to get home to own bed and food!!! I think you and ds have done really well!! Safe trip home x

@openupmyeagereyes oof at the early start, have all the coffee!!
@danni0509 sounds intense! We usually get a holiday cottage but end up sharing a bed anyway as DS can't sleep on his own somewhere different, he gets so upset its not worth it!!
@carriebradshawwithlessshoes have a great time away.
I have had an interesting time recently! DH gone away on dream bucket list trip to celebrate Big bday, got stuck there as flights cancelled so still away, due back Tues. DS has been poorly and given it to me, last night I felt soooooo rough, stomach pains etc. Today still rough, really like covid was, but still neg tests! All v odd. Got my cold medicine and my Vic stick, DS happily bouncing on trampoline and doing races in the garden. Is it bedtime yet??!

Carrie I couldn’t have him in an interconnected room I need to be able to see him if that makes sense, at home his own room is fine, my house is safe. He has a stair gate on his bedroom door and all my doors are locked and keys removed etc.

But on holiday. Ds has been talking about breaking all of his bones jumping off the balcony etc etc, hes a loon and wouldn’t think twice, he keeps trying to leave the room too, but there’s a latch at the very top of the door he can’t reach.

Ive had to have the suitcases laid infront of the sliding doors so that if he try’s to get on the balcony when we are asleep he has to move them and so the noise alerts us iyswim. I did ask for ground floor but then I would of had trouble then as the pools are just across.

Hes pissing me off this morning, we are in the kids pool and he keeps running out and trying to grab people’s beer and drink it, trying to snatch it from their hands. Ffs! Get me home, he’s taking proper libertys now! 😅

I feel like that with peoples wine Danni!!! I sometimes think for all kids enough enough. Prob ready for home. Yeah, re the interconnecting rooms we leave the door open, it’s just a bit more space and a bit quieter for sleeping.

get well soon Susan! Hope dh has had a lovely time and you get to do something together to celebrate too

Hope that you feel better soon Susan

Nearly there Danni, hope that your DS gets tired of the grabbing the drinks game soon.

Carrie enjoy your hols.

We have been to a big event in our city with lots of crowds and bands. I was a bit apprehensive as it hasn't been on since DD joined us and in the past DS enjoyed it but needed lots of reassurance. I used to go as a child and I have always loved it but wasn't sure if I was being selfish. It was a great success - DD in particular loved to dance and DS chatting with the band members. It was one of those rare mornings when everything goes like clockwork. I was not looking forward to dragging my 2 back up the hill home when I spotted the bus that only goes once an hour. DS loves buses so that made his day! DS also v good about talking through his feelings- they're both v tired now and DS said it was because it was noisy.

danni you can buy window alarms. I have a friend who takes them away with her. I think I’m going to get some. I have been known to tie up windows with no key in holiday homes.

Sounds like the holiday was better than before but still room for improvement! Roll on Monday for you.

Susan hope you feel better soon and dh gets back ok.

dimples glad you all enjoyed your day out.

Tried to get ds out for a walk this morning but no dice so we’ve just stayed at home. He’s being difficult on and off. He was shocked by a dog visiting our neighbour earlier (he was being nosy) and was taking about shooting it. Trying to stop my thoughts about the future from spiralling…

Urgh cannot stop sneezing!! Massive ones that actually hurt! Mad!

Hello, please can I join you? My son is 8 and was diagnosed as autistic in April. We've had a very stressful 6 months getting things organised at school (mainstream, private) and he was almost suspended a few weeks ago after aggressive behaviour. Actually, he was suspended, but after I explained that I thought the school had done little to help him despite having been kept fully informed about the road to, and outcome of, his assessment, the suspension was overturned before it started (less than an hour after I'd been informed). Today was the last day of the school year and I'm so relieved we made it.

To be fair, it's been a stressful time all the way through school so far, but the last two terms have been particularly hard. My son's self esteem has been shattered by the school's response to his challenging behaviour over the last 3 years, and everything came to a head this year. I need to try to help him regain some of his confidence over the summer, and support him with anger and anxiety.

I'm still very new to understanding autism, what support is available, how to negotiate with school etc. but I'm trying to learn.

Welcome Acronymsandinitialisms

Well done for getting through a difficult time. Do you feel that the school will be supportive now he has a diagnosis?

The next step is probably to apply for an EHCP if you haven’t already, to clarify the support he needs.

Welcome @Acronymsandinitialisms well done for getting through all that and remember, be kind to yourself, we had an awful time in mainstream and its definitely left anxiety for me and DS.
I went to bed after DS last night at 9pm and didn't even drink the herbal tea I made before I fell asleep! Sweated all night, grim I know, but feeling a bit better today. Urgh!

Thanks. There doesn't seem to be much point in seeking an EHCP at the moment but we'll definitely do it if we move to a state school in due course. For various reasons we want him to stay where he is, and his current school has absolutely no experience of EHCPs and would probably boot him if we got one.

The school has done practically nothing so far. I had to be uncharacteristically firm with them last month about their treatment of my son and they've suddenly promised a ton of adjustments. I am pretty sure they've been discriminatory and I think they are worried I'm going to take it further.

We went to a relaxed session at a trampoline park today. He didn't enjoy it as he wanted to chat to the other children and that didn't work out.

Trouble is, if I took him to the later session, he'd almost certainly fall out with someone within minutes and end up hiding in a corner.

I hope you're feeling better today Susan, not the best weather for having a fever

Acronymns sorry the trampoline session didn't go well. It's hard sometimes to work out whether the relaxed sessions are preferable to the regular ones. On the plus side, they are usually quieter, but as you said, some dc don't get enough interaction from them.

Ds was up at 3.40ish again today. I am due to review the melatonin prescription with the GP anyway soon so I should do that first, I can't see her increasing the dose but you never know. Over the last week or so, we've had days where we haven't given it to him. Other than helping him get to sleep a bit earlier it seems to have no effect. Sometimes he sleeps until 5 but often only 4ish or earlier. I also had a discovery call with a consultant today who will work with us to try and help ds with his anxiety and self regulation etc. first off. I'm hoping that this will impact on some of the areas we are struggling in.

Hope that you are feeling better Susan

How was your first day of 'freedom' Danni?

I hope that they have some suggestions re the early starts Open

Hi all and welcome @Acronymsandinitialisms ! Sorry things have been so rough. Do you know what your DS finds particularly hard about school? Is it academic, social, sensory or a mix? Would school be open to maybe getting an EP and/or OT in to observe him at school and make recommendations? If they don't have much experience of autism it might be worth getting some proper experts involved. DD is in a private mainstream too and does OK but there are definitely some things she struggles with and although the school is well-meaning they do quite often miss out on the obvious adjustments like letting her know things are happening in advance.

I guess your DS knows he is autistic given he went through all the assessments - does he give a sense of how he feels about it? I know for some kids it's a relief to have an explanation, while others hate feeling "other". There are some great books out there with neurodivergent characters that DD has really enjoyed (I'm particularly fond of Elle McNicoll's books) - and also books for kids more specifically about being autistic (e.g. Abigail Balfe's is fantastic, and Camilla Pang has one out too that looks good - she was also Dx'd at 8, coincidentally).

I hope summer hols are going ok Light

How is everyone doing? Ds finishes next Thursday and we have a couple of family days for transition and an alternative sports day.

AR was ok this week. We have agreed support for ds which I hope will make a difference next year 🤞

I think I’ve got a dvt. I started with calf pain a week ago, then chest pains 2 days ago, been largely ignoring it and taking paracetamol. I have varicose veins anyway (had surgery in one leg to have them out when ds was 2) but have started to panic a bit now it’s not going away and chest pain is worse.

I got ds out in the taxi at 9am and got my friend to drop me off at a & e. Dh is working until 8pm.

Anyway I had bloods. Ecg and chest X-ray I’m just waiting to be taken for leg scan now but my calf is 3cm bigger than the other and I have odema so they are thinking dvt.

ffs!

I had to ring dh he’s had to leave work to get home for ds at 2.30 and if I have to stay in overnight then god only knows I’ll have to sort something, dh is working tomorrow too.

How scary danni. I hope you’re on the mend soon

Glad to hear your AR went well and support strategies talked through for Sept @openupmyeagereyes
How scary @danni0509 and a nightmare logistically. Thank goodness you're being seen and treated, big hand hold from here.
I have NC to yet another disc world character after horribleness on aibu thread. Still feeling rough but better. Not covid but v similar and still got the cough. Have rediscovered buttercup syrup for nighttimes to help. It's DHs birthday today so we went and did some touristy stuff locally, was really nice, and going to have a little party in the garden when DS gets home. Sports day tomorrow and then only 4 more school days until he breaks up! DH off on a stag weekend the weekend after school finishes so don't know how to fill all that time but then only 2 more weeks after that hopefully until we go away.

Hope that you feel better soon Esme and that you are treated and out of the hospital soon Danni.

Open hope that the additional support is effective.

I had short SEN plan review with DS's class teacher and TA yesterday. They said some lovely things and said I am going to be amazed by his sewing - all those threading activities we used to do seem to be paying off! Sports day was moved to today due to next week's weather forecast. DS seemed to really enjoy it - he was clapping himself as he completed the sprinting race in last position. He got the biggest applause of the morning

dimples that is so lovely, his school does sound nice.

How are you doing @danni0509?