Primary school Auties: into 2020! - thread 4

[LightTripper]

This is the continuation of the thread for parents and carers of autistic children in Early Years and KS1. Most of us are parents of children in Reception or Year 1, but all welcome!

Here are the links to the previous 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

Brilliant that you have someone in your corner, Harley! 🌼🌸💪💪

You are such a rock Harley but I'm keeping everything crossed that you've really got somebody good in your corner to support you now!!

Arg! Got bit of a dilemma going on which I’d like your thoughts on. Our dog has died in her sleep, very much out of the blue

Poxy message posted early!

DH (also autistic) thinks DD should see the hound so she ‘understands’. But I dont think she should. She’s 4.5 but emotionally much younger and is going through a period of awful sleep with bad dreams and v.clingy during the day. She has had a couple of death encounters with my sisters dog and mums cat, both recently. She knows death means we don’t see them again. I think seeing a dead dog will be massively difficult for her to manage; let alone the added fuel to her bad dreams catalogue. What would you do? Any similar experience?

Furry I don’t think it’s necessary, especially with the nightmares. I hope you and dh can work it out.

Harley great the SW was on your side. Hopefully she has some clout with the school. Is she going to talk to them?

danni hope you’ve recovered from your shopping trip with dh.

Things are up and down here. Emotional outburst from ds yesterday because one of his toys was broken. He’s been up this morning since around 3:40. I’m meeting with the SENCO next Tuesday morning following our recent emailing.

He’s going to be tired today so I don’t know how school will go. Yesterday was ok but he’s having periods during the day where he refuses to listen and doesn’t want to do any work.

Sorry about your dog furry. It's a tricky one but I'm not sure I'd want our kids to see the dog at this age. Maybe something to commemorate her life would help, like a picture book or social story?

Sorry ds is having a tough time open. I Hope the meeting with the SENCO goes ok. It would be good to get to the bottom of what is stressing him out.

I've been working all this week and for the past two days dh has been doing all the drop offs and pick ups. One last day of it today. It feels very strange not being the primary career for a few days. Also forgot how tiring it is doing a full days work!

liv that must be strange. Is it a one off or will it happen more now the dc are older?

I’m not sure ds was stressed at school yesterday. I’m not sure we can expect that he is going to behave brilliantly every day, sit and do his work and take movement breaks when he needs them? At this point it seems like that’s far too much to expect on a daily basis and setting him up to fail? What do you think?

I mean, obviously it’s the goal but is it to be expected now?

Sorry about the loss of your dog furry, I agree that it would be best for your DD to not see the dog. I would imagine that could potentially be very upsetting. I was with our DDog when she was put to sleep and held her paw but still found it upsetting to see her dead once the euthanasia had had it's effect.

Sounds like they are expecting a bit too much of a 6 yo open? Maybe too much too soon. Will he be able to 'know' when he needs a movement break or will a TA sit with him and help him by noticing the signs making sure he has a balance of breaks and doing work which is achievable? Hope the Senco is supportive and you have good meeting next week.

Liv are you back to work full time or is it just for this week? I had a full day's training last Thursday and it was so weird to come home to DD being collected from school and fed etc already!

Harley so good to hear that you have the Social worker in your corner! Hope things move forwards for your and DS.

Hope everyone else is having a good Friday?

Someone form the communication and autism team/early years team went into school went into see DD and speak to Senco and teacher about lunchtime support yesterday but haven't heard anything about how it went, from either of them. Apart from looking tired and having this tic/twitch DD seemed quite happy this week so expect school to say that all is fine and she is doing so well etc.

So sorry about your dog Furry - what did you do in the end? I don't think I'd suggest DD seeing a pet that had died but I would probably let her if she came up with the idea herself... though having said that I'm not sure I've ever seen a dead pet so I might be underestimating how I/DD would handle it.

Hope you hear soon from the school visit Little - is the idea that they might be able to provide somebody to help DD with lunch break?

DD was a bit emotional this morning. She tried out a new club with a friend after school yesterday. She decided not to do it when she got there and they went home instead and had a nice playdate, but it meant she didn't get time to do her homework. This is completely a non-issue for the school (and me!) but we always do it so it was an issue for DD and she got a bit teary about it this morning. Talked to a couple of her teachers about it and they were both reassuring so hopefully she'll be OK but I think she's really tired and a bit overwhelmed. She also said she didn't do Spanish again yesterday (apparently she had a temperature and went to the office but the school haven't said anything). I think we should probably check in with the SENCO again and just make sure everything is fine. Her class TA got changed too (so the one we spent all last term going to Early Bird with is no longer her class TA!) She doesn't seem upset about it but I suspect it's not helping...

Never mind. Got quite a quiet weekend planned so hopefully she'll find it all a bit easier next week.

I had my first "morning at home" today. Got some stuff done, took some bits to the charity shop, washed our chair covers, put a bunch of stuff away. No massive achievements but I stuck my audio book on and had a cup of coffee and just a very nice morning bimbling around sorting things out quietly - bliss!

Thank you for your views on the hound, ladies. It helped to know my gut feeling was accurate. Hard at times with a ASD DH I must say...the adult meltdowns are harder than DD’s....but we’ve come to the conclusion that DD can help pat the earth down and put flowers and a ball on top to say goodbye. I’ve also nipped into the book shop and bought Badgers Parting Gifts to bring out if needed. Thanks for your support and I hope you have a lovely weekend.

Open I'm freelance so it's very variable, it also depends on whether dh is working (also freelance) as he is the higher earner. Looking forward to going back to normal next week!

I think at 6 it's asking a bit much still, even of NT kids I reckon.

Little just this week. Yes it's been super weird!
Hope you get some feedback from the visit soon.

Light hope dd is ok this evening. I'm very impressed with what you managed to achieve with your morning off. Think it would've been a cup of coffee and TV for me, preferably under a duvet.

That sounds like a good compromise furry. Sorry it's tough for you dh.

Got home to two very relaxed children this evening. Maybe I should spend more time away from them

Hope everyone has had a good weekend? A quiet one for us but it's been nice to see the sun and managed to get DD outdoors for a nice walk in the forest today.

Do any of you guys use an SN buggy, like a McLaren Major for example? We're usually adapting our trips out so DD doesn't get too tired or starts sensory seeking but am wondering if a buggy might be a good investment. Last summer we used an old umbrella style buggy a lot whilst in Sweden but DD was just an inch or two too tall for it and we haven't replaced it with a bigger, SN one. Now thinking it might by worth having a bigger one for those days when walking is difficult or on holidays etc... But she might decide she is too old for it now!

We have a SN buggy for ds, a maclaren Major. I really wasn't sure about using it at first but now we use it everyday. It's brilliant and ds loves it.
It is a bit annoying that you have to buy all the bits individually, footplate, hood etc but I have found some for sale on eBay for a bit cheaper in the past.

That sounds great Liv it might just get me and DD out and about a bit more as we're a bit restricted at the moment. Doesn't help that she gets travel sick in the car so long journeys are out of the question too.

It's definitely given us more freedom and made drop offs/pick ups about a million times easier!

Its 8.20 am curretly hiding upstairs. Along with all thats going on with school i also have a grandma with liver cancer, a grandad in end stage dementia, a uncle dying of a brian tumour and a dog with a mass that is suspected cancer. The eldest ds whos 15 and asd, adhd and anxiety who reads my messages and emails over my shoulder (i didn't know till he told me last week) has completely shut down and won't go to collage or leave the house due to all thats going on.
The younger 2 are oblivious to whata going on but the 6 year woth anxiety the stern apprach tuesday and wednesday (i refused to do it any longer) has but him in a bad anxiety place and hes soiling and wetting all the time again. Hes still struggling with school and after the social worker came friday spent a good 2 hours asking over and over again who she was why she was there who told her to come how did she know where he lived what was the point of her coming? I just want to go back to bed already!

The 6 year old has asd which you all know i just forgot to add ot to that message.

Hugs to you Harley

That is a lot for anybody to deal with. Re: DS, you've tried the stern approach and you saw immediate impact on his anxiety, so you know you weren't crazy - you had a reason for parenting him the way you do. I know it's so hard when everybody is making you doubt yourself but you are a fabulous Mum doing the best for your boys.

What stage of college etc. is your older DS at? Can he afford to just take some days at home? It's a lot for him to process at that age: I actually think it's such a tough age to deal with family trauma because you understand everything but because you can't drive or contribute financially or help with most of the practical things that the rest of us might throw ourselves into you can feel really powerless. Must be especially hard for a kid who already has anxiety issues due to autism/ADHD. So if he needs a bit of time just hunkering down at home that may just be what he needs: would college send some work home for him, do you think?

Anyway, I'm sorry, that's probably not much use to you really. This too will pass but it's difficult to put one foot in front of the other to get to the other side. I remember our horror-year in 2017 and it just felt like the second we started to get on firm ground something else crumbled and I had zero capacity to deal with it.

Thats the bit that i find hardest is not doubting myself. I probably was not good yesterday i sent a email to the head teacher telling her what the school and la and there wild accusations are doing to my child and that i would love it if she passed it on the ss as concern and that i wanted it on record none of its new.

My eldest is 15 he has a ehcp. His high school broke the law last year they removed all his support including all that was documented in his ehcp which resulted in the placement breaking down which in essence broke him. He now attends collage as hes unable to attend school and is only timetabled to do 3 and half hours a week hes manged a total of 3 hours since christmas. Collage are great and understanding. All pressure has been removed from him. He isn't going be doing gcses. His collage are working on his mental health as they say its heartbreaking watching him want to go in to the class room but hes just unable to open the door and walk in. The idea is that they use all his echp and targets to build to help him in the next couple of years.

I know what i need to do and what needs to be done its just at the moment i feel like i am constantly walking in treacle. I really appricate all the support. I just to rant sometimes. I know bo one is able to help our situation but he helps me to come here and just ramble sometimes.

Harley you are doing a fantastic job under a lot of pressure! It's very hard not to doubt yourself but as light said you already have proof that your method works.
I'm so sorry that you are having such a rough time of it

That sounds tough Harley and it's ok to feel totally overwhelmed by it all sometimes.

It sounds like your eldest DS's college is really supportive and doing the right thing by focusing on him mental health for now. There is absolutely no need for him to worry about GCSEs right now, there will be plenty of opportunities later when he is in a better place. You are doing a great job with them all. Please make sure you look after yourself as well though as it's so easy to focus all energy on DCs and poorly relatives. We have had a couple of really challenging years with two bereavements in DHs close family well as my DM going through a life changing operation to remove cancer, all this whilst going through the assessment procedure for DD. My health really suffered at the time!

Thank you all. Its nice just to have someone to talk to.

Ds the 6 year old goes in to school at 9.40 i have added 5 minutes to the start of his day every few days. Now last 5 times i have picked him up hes sat in the reception area. Apparently after break finishes at 11.05 he asks to come to reception and they allow it. I pick him up at 11.10 i was 2 minutes late on monday and the head was walking him around the reception area trying to talk him back to class what i don't get is how they are perfectly fine doing the soft approach they are never stern with him and he basicly does as he pleases at school as teacher just stare at him with the i don't know what to do face.

That does seem bizarre given they are telling you you have to be strict with him at home and a soft approach is the source of all his problems!