Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

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

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

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

I would not necessarily call it paperwork but there is a huge amount of DS related admin - when I compare it to what I have to do for DD. A lot of my paperwork is adoption related eg financial assessments, appeals, letters to birth family. Then there have been applications to charities, eg the Family Fund. My current SENDIST appeal is my 3rd EHCP appeal. I spend a lot of time chasing things up. When DS was having therapy funded by ASF 22/23 I had to complete weekly diaries of his behaviours. I must have filled in 100s of questionnaires for OTs.

Just about to collect DC. First day back and DS was unsettled for the last 2 including deliberately stomping on my injured big toe

dimples that does sound a lot. I guess it just makes me wonder whether we’re being proactive enough on ds’ behalf. Maybe there’s support we should be chasing but aren’t.

I suppose (open and dimples) is it not the case that a SS is automatically a platform for the sort of therapies dimples refers to. So if he’s in a SS he will be accessing a lot of that, albeit not all, automatically without the need for applications/ funding paperwork? Is that the difference? When DS was in MS it was incumbent on us to get all that in place for him one way or another. Now I just get a form in DS bag to say I agree to him having SALT/OT etc.

I agree Carrie that it is probably due a lot to the type of school placement. Also, we do have access to additional sources of support from post adoption - but they certainly make you work for it. I think DS's DLA is up for renewal this year- to be fair they renewed it for 6 years last time

First day back went well. After school DS asked to go out on his new trike. After a rather low key response on Christmas Day he loves it. I bought it with help from the Family Fund. It is absolutely enormous and I do worry that DS is going to clip cars as he zooms down the pavement! However, it is an absolute delight to see his pleasure riding it. He is a long way off riding a bike but he is revelling in the freedom his wheels have given him.

Dimples that’s a freaky story as same happened yesterday here! DS got a new scooter for Xmas as you say quite half hearted. DD said oh let him have a go just outside the house, he goes so slow. DH was working so I said well ok then in those circs. Got out and omg he was like mo Farrah on a scooter! Set off round the estate at what looked like 30 mph I thought he’s going to crash into parked cars! Im shouting stop!!! He ignores… I’m running like a lunatic, nearly took out this old woman who shouted at me ‘oooo love you are fit!’. DS then goes on one leg with the other outstretched and one hand. Matters came to a sorry end when he ploughed face first into a bush 😬😬😬. I was like ffs!!!!! Im seriously absolutely knackered atm (sorry Ahna, I know that sounds a poor do!) Thought I was going to have a coronary!!!

Does DS scoot dimples??

re the bike I would worry… DD has only just ‘got’ it and she’s 11 (and NT).

Wouldn’t

Carrie I imagine we made similar sights! My other issue is that DD is just learning to ride her new balance bike and is v slow so she is lagging behind, wailing if I go too far ahead. DS also gives up quite easily on pedalling uphill and then lets the trike roll back. So I am constantly shouting 'brakes' or watch out for ...There were 2 elderly neighbours chatting on the pavement, DS rang his bell and said 'mind out the way'. DS has a scooter (3 wheels). My brother bought him a 2 wheeler last Christmas. Same issues with scooter, not looking where he is going/getting distracted. Sounds like you have inadvertently signed up to a New Year's fitness campaign, like me!

Haha this made me laugh, glad that the DCs are enjoying their new wheels so much but it sounds stressful too!! DD1 has no interest in a bike or trike at the moment other than to spin wheels , she used to like the balance bike but that’s going way back now. DD2 is another story.. think we will have to get her a proper bike soon, the Dutch stereotype is true…

meanwhile I’ve joined the injury club with a bad knee injury. Apparently it used to be called housemaids knee and it’s from being in knees a lot. Pretty sore, I blame cleaning and changing far too many nappies. Means I can’t really walk let alone run which is already making me feel down in the dumps.

hope everyone has a good week!

Oh no Ahna, sorry to hear that. I hope it’s better soon.

Ahna sorry to read that. Hope that you are on the mend soon.

I just heard from my GP that they have eventually received my x-ray (3 weeks later). My big toe is broken but as the fracture is at the base of my toe it just needs time and elevation to heal. Unfortunately he said 8-12 weeks recovery so the personal trainer vouchers I received for Christmas are not going to be used any time soon, ugghhh

DS has re-started pulling his hair out with a vengeance. It had all grown back but he started pulling it out the day before term started. When I picked him up yesterday the new bald patch was x3 bigger than in the morning. I have tried to talk to him about it but he says that he just likes doing it and doesn't mind being bald.

@Ahna65 im sorry about your knees I know how much running means to you. Is there any treatment or just rest? I hope you are back to it soon. I bloody hate exercise but fully appreciate it as an outlet for a lot of people.

@dimples76 eek re the toe. The problem it seems with broken toes and fingers is not a great deal can be done, I fell at uni and broke my little finger and just had a silly strap on. Bless DS, is this an anxiety issue? Can you or school divert to another outlet?

hope everyone else ok, all good here. Nothing hugely good or bad to report!!

I won a gym membership at a raffle a few years ago dimples. I propped it up for a while on the mantlepiece until it ran out. I am however (no joke) considering Botox. Anyone???!!!!! 🤣

Too scared carrie, though could definitely do with it.

dimples probably not a coincidence tying in with going back to school? Hoping you get him into a new school soon and things improve.

Ds was ok at school
last week. Mon & Tue more rocky but today better so am keeping everything crossed.

carrie have you tried something like the Foreo Bear and/or a red light LED mask?

No, has anyone else? I was quite surprised in a recent work conversation to hear that all my female colleagues had Botox! With no exceptions! Ranging in age from 20s to 40s! On talking to male colleagues their partners all do too! I’m def late to this party if this is the norm!

Not me! None of my friends and family, colleagues have either ..as far as I know. But I used to spend lot more time and money on my appearance when I was a solicitor. Then, when I became an academic I developed a different style. But since I became a Mum and more so since the lockdowns I have really let myself go. Even to the point that my pierced ears healed back up. I did go to a tattooists and had them pierced again in the Autumn but that was enough of a challenge for me!

I can’t fathom why anyone in their 20’s would have Botox! Fillers, yes if that’s the look you wanted.

Well ds had a better end to the week at school thankfully and he did really well in his swimming lesson. How is everyone else doing? I hope injuries are getting better.

I’m supposed to be trying to lose the few pounds I put on in the middle of last year but so far I’ve put on another pound

I feel my convos go round in circles. DS had an end of week report. Detailed v few toilet accidents, great engagement and cooperation. It then said what the great engagement and cooperation was in relation to. I don’t want to be too outing but think what you would read at playgroup/ nursery. Finger painting and play do type shit. I’m supposed to be happy with that I assume.

they then sent home details of a school trip. I can’t give details but the title was something aligned to ‘we are going to find the fluffy bear.’ He’s 8 ffs. What is the national curriculum for an 8 year old?

so do I say? They would just jump on the ‘we have him engaged’ as their target with a big fat tick.

reminds me of Dannis comments back in the day that her school does nothing for education. I often feel this for DS is a tolerant babysitter. He can do so much better.

carrie does the school website outline what ‘curriculum’ they follow? I don’t think SS follow the national curriculum, at least not based on chronological age. What does ds do at school when (if) they try to give him more academic work?

What happened with the EP?

I don’t know. Two options are to (1) get academic work written into the EHCP so they have to provide it? (2) try and find a more academic school? I say this because I think you’ve had many conversations with them about this and things haven’t changed.

Have you ever spoken to a solicitor that specialises in education/EHCP’s etc?

Just returned from another hair-raising adventure with the bike and trike!

Carrie, is school's view that they need to get him engaging with more playful activities before they can tackle more academic work? Definitely feels like my DS is being looked after rather than taught a lot of the time BUT I think that he needs that. School find he has zero energy in the afternoons and always needs hundreds of breaks throughout the day. Possibly easier for me to accept that as I don't think it's possible to stretch DS more and he has made (very slow) progress. It does seem as though your DS's school might not be the best fit, but I know that you have explored a lot of other options - so perhaps it is the best available for him. I don't know, going forward might he be able to attend school part time and have some private tuition?

We're going to meet up with one of DD's friends this afternoon at the activity farm/soft play place we have annual passes. Taking my 2 alone is generally fairly easy but when we meet up with friends it's always a bit trickier. I don't want to hold DD back socially though and there's only so many times that I can ask family for help

Yes, good idea from dimples. Pt tutor at home or even at school, via EHCP might be doable.

Hope this afternoon goes well.

It's hard isn't it. My DS is capable of academic work but his pda creates a barrier a lot of the time. His school did the bear thing to practice conversation skills and they often do lots of messy.play for sensory feedback. But he's also started doing history and science now and they give him differentiated work in maths etc. I've also bought some ladybird history books that we read together.
DS surprised me this morning and did an art workshop online for a whole hour! He wanted to draw his own creations but that was fine. I however have an awful cough after having a bad cold last week so have gone back to bed!

I think ND people under performing educationally, compared to what they’re capable of, is quite common. Just the stress, anxiety and low confidence is too much. I see that in members of my family who I think are ND. Bright but underachieved for a variety of reasons.

With my own ds it can be hard getting him to do stuff he doesn’t enjoy or see value in, even if he’s capable of doing it. Some days he does work at school, other days he doesn’t. I guess it means he can’t cope with it that day. I think that I have to fully accept that’s how it is for him. At least for now.