Primary School Auties 10: Summer and beyond 2022

[LightTripper]

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

What a nightmare danni! Also sending in Mumsnety hugs. I agree with Open my dh is also rubbish about seeing a doctor/talking to people about things. So sorry you are going through all this and hope ss gets back to you soon.

danni how are you doing today?

Ds awake at 3:40 again today. My turn to get up

I’m really sorry to hear all that Danni.

DS had been doing so well on the meds hadn’t he, so what do you think has changed? Is it as Open says change of routine? Is he picking up on the stress with DH? Do you think he’s been unsettled with his leg procedure? Or do you think the meds have levelled off? There should be no reason he can’t get back to that position tho…and not long til school.

re DH it’s not your fault that he’s not sought help before now. I know DS is a total preoccupation, I even let things slide that I shouldn’t with DD and she’s my child, not my partner! Is he now going to look at meds, also (sorry sounding like a lawyer here) has he resigned completely? Can he take a sick leave period which may entitle him to more financially at least for now? I know it’s hard to see but a good thing may result from a bad if he can find a job that’s more suited to him… your situation happened to a friend with her DH. He got out of that position and ultimately found something that’s much better for him (and therefore the family generally.)

in the meantime I hope SS get back to you…

Open sorry about the early start but great you have been linked with a comm paed. I thought about you as the school nurse rang me a couple of weeks ago and said he was a direct link to the community paed if we needed anything, as he was for all children at the school. Said he could fast track anything. I thought that was a really good service and wondered why more SS don’t have that (if they don’t?). I do think sleep meds is a Pandora’s box and there’s loads you can try beyond what you have already if you are happy to do that. Alimemazine has been the winner for DS.

Oh @danni0509 big big hugs, sorry it's all so tough. I hope you get some respite sorted soon and your DH gets some support.
@openupmyeagereyes I don't know how you do it all on such little sleep. Hopefully the review will lead to some solutions.
We made it back from holidays and now settling back into home routine. DS was a superstar overall, he does like going on holiday, and he even realised how he needed more sleep after staying up with us on night 1 and being totally shattered the next day! So DH and I got some time just for us too most evenings, which was lovely. Still, back to reality now! DH at work today but then off tomorrow as its DS' birthday so he's getting excited already, I'm just thinking how is he 7 already?! Got some things planned for next week too now so starting to feel less anxious about it. Got the details through for DS' taxi for school too, new firm and new people, buy seem friendly so we will see!

Cross Post @carriebradshawwithlessshoes ,hello!

Hello Susan!!

And a big happy birthday to DS!!

Aww thanks!
I've also decided to restart my little business that I shelved a few years ago and booked a big trip for my big birthday next year! So been busy ha!

Sounds exciting on both fronts! Where are you going and what’s the business? If either is too outing ignore me!! ☺️☺️

Hi all hope it’s OK if I join this thread

DD1 is 3yo so not quite primary age but many of your stories and struggles resonate. We are awaiting the formal diagnosis but doctors / psychologists / us as parents firmly expect autism and are getting her all the help we can

typing this from a holiday which has been pretty exhausting. Nice to see her have some happy moments and family time (have a dd2 too who is nearly 2yo) but some huge meltdowns, still so unpredictable and also just constant escape risk / would run into the nearest lake / river if she could (loves water) . Means DH and I can’t really take it in turns to rest at all, near impossible to watch them both alone

and like many of you, sleep so
tough, most nights she’s up 1-4 after finally settling 10/11 then up from 530 ish. pending a referral when we are home re melatonin. Also signed up for a Hanen parents communication course so a couple
of hopeful things in the pipeline after such a tough few months

anyway, nice to share x

Hi @ahna68 welcome!
@carriebradshawwithlessshoes it's Rome so I hope it all comes off!! I used to dabble in freelance editorial services a whole ago so tentatively dipping self back into it all...Still not sure, as dream is to run a bookshop after writing a hugely successful novel ha, but it could work well for now?!

Ha while not whole! The typos on this phone!!

Susan happy birthday to ds, I hope that you have a wonderful day! What have you got him, out of interest? Congrats on starting work again, I hope it goes well.

Welcome ahna68. Sorry the holiday was a bit fraught but hopefully dd settles down once back into routine. I never had two young ones to handle but I can imagine that it's tough, hopefully easier as they get older as liv has found.

While I was getting ready this morning ds climbed up to the cupboard, took out the key, let himself out of the back door and was running around the garden by himself. I had no idea until dh came up and told me (thank god for wfh), though he had been upstairs with me about 5 mins before. We had made so much progress but there have been a few incidents lately that mean we now have to watch him quite carefully again. He's so much faster now he's older. Anyway, I have ordered an Apple Air Tag and some holders to attach it to his clothes when we're out. I also need to order a couple of key safes, one for the front door and one for the back. The large windows are already locked (for years) and I feel it's only a matter of time until he scales over the fence and runs off. Sigh. I was hoping he'd be more sensible when we got the the point that he'd be able to do that but I'm not sure that's going to be the case now. We may have to invest in some anti-vandal paint...

I really liked the co-regulation book, though you do need to read the declarative language book also as you're supposed to use the two together for best results. I think it would have been really useful when ds was younger, though it was not written then. I can see how using the techniques have an impact over time, it's certainly not supposed to be a quick fix. I've already been trying it in a couple of areas but need to brainstorm some more ideas.

danni hope you're ok.

<waves to everyone else>

Happy Birthday to your boy Susan.

I'll have to check those books out Open. I have a locksmith coming out next week to try and make the house more secure and prevent DS accessing the kitchen unaccompanied. One of my friends has a DD 12 who is autistic. Earlier in the week whilst her Mum was out at work and her dad wfh she climbed out of her sister's bedroom window and was missing for hours.

Thinking of you Danni

It's the last day of our hols and overall it has been a success. DS is definitely unsettled and has been awful with the dogs. Have had to move back to my no touching the dogs rule. Bit of tension as my Mum and sister have tried to help/offer advice which hasn't always gone down well. We were at a beautiful beach seal spotting (successfully!) earlier but DS wasn't following any instructions. My Mum really lost her temper with him - I wasn't there as DD is much slower than her big brother and cousins and we were trying to catch up. I guess I should just be grateful that he didn't try to hug/attack the seals

Oooh dimples what will the locksmith be doing? at your friend’s dd. Did she say where she’d gone?

Glad your holiday was mostly a success and I hope the journey back is ok. I wonder why ds struggles with the animals.

Open the police found her (hours later) at a metro station. I just don't know what they can do going forward, it's just so awful.

The locksmith is going to advise a but I definitely need a lock (by key) to prevent DS entering the hall as this will prevent him getting into the kitchen and also out of the house. I'm hoping that this will make things less stressful when I'm upstairs with DD

Susan Rome sounds fab. Went for honeymoon but too long ago now! Good luck too with the new business!

Welcome Ahna, we have chatted before on another thread. Our stories are all different and I certainly find we have ups when I may say DS is doing or not doing something and then downs when he reverts back, but at your DDs age he was often in the pushchair (do you have it? Will she sit in it?) not just for walks but for other things too like sitting in cafes. On hols still now I find he will play happily IN water so if you let her in the sea or pool will she then play with an inflatable etc whilst you are around?? I appreciate not totally relaxing but sitting on the seafront watching her splash in the shallow water with DD2 or being with them messing around in the sea or pool at least means you aren’t doing the dreaded chasing them game which is knackering. Also she’s only very little… DS has just turned 7 and on Monday we went out for lunch. It was one of those affairs where you get food then have to walk to find a table. It was busy so I had to walk with a full heavy tray, I was thinking ffs please don’t run or I’ll have to drop this on the spot! But he walked with me nicely to find a table and then sat opposite me and ate his lunch even tho he was on a long booth type seat with people either side.

even a year ago he wouldn’t have done that and don’t get me wrong if I knew worst case scenario I couldn’t have put down the tray I wouldn’t have done that but as it was, all was ok!! So things do change. I think our last conversation was re sleep… theres lots out there you just need to get the right thing and right dose., PM me if you want to.

Danni, hope you are OK.

Good to read everyone’s stories, hello to all!

Open, would you let your DS out in the garden on his own? If not why not? Your post got me thinking what I would do or not… he can’t get out but would be prone to random putting things in his mouth which I think would be the worst case scenario.

Likewise Dimples, what would DS do? A Dr once asked me that… if you left him what would happen? It did make me think (still does!!!!)

My DS wouldn't necessarily stay in the garden, especially if he heard one of our neighbours. He would wander off to talk to anyone (and go off with anyone) and he has no road safety. In the kitchen he climbs up onto the work surfaces and hunts out sweets on the top shelf of the cupboards- but that's also where I keep medicines, washing detergent etc. After removing everything I thought he could climb on to get up DS has become more creative which has led to more accidents and more unintentional damage- e.g.he opened the dishwasher and stood on the door to get up.

carrie usually we go out in the garden with ds because he has form for trying to climb over the gate and fences when he’s upset. We have the supports on both left and right fences so he can climb onto those. I’m happy for him to go out for a short while when I’m in the kitchen and can keep an eye on him and pop out when I can’t see him. In this instance I was upstairs and had no idea he was out.

Susan I adore Rome, have been there 4-5 times, can’t quite remember. So many wonderful things to see and do. Are you planning to take ds? Have you been before?

We are lucky that ds can, generally, be left to his own devices inside the house, he rarely gets up to mischief. Unless he’s upset or angry in which case we’re with him anyway. Now of course we need to secure the keys!

We have the opposite problem with keys. I'm not worried about ds escaping/running away because he loves being home so much but he loves locking us outside in the garden and refusing to let us back into the house. He once locked me and dd in the garden for two hours, I didn't have my phone either so we just had to wait until he saw fit to let us back in.
He also loves to hide keys which is very annoying.

How frustrating liv, what did he do while you were outside? Go off and play or taunt you through the window?