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

Ahna do people really say that? That’s ludicrous!

great news danni.

we have a family meal to mark something significant today. It’s a big deal to the person concerned (a GP) they have booked a private dining room in a nice hotel for afternoon tea. It’s a sit down affair, 10 people going. Suspect it will be a few hours.

curious to know if you would/ wouldn’t take your Dc in these circs? Your ND child I mean for those of you with others. DD is obv fine.

Yes @carriebradshawwithlessshoes , I do think the Dutch hide behind the ‘direct’ stereotype sometimes and can be plain rude

I wouldn’t be able to take DD1 to that sort of thing, she wouldn’t sit / eat and she’d quickly want to leave the room, or she would start climbing on things / generally not ok in a ‘fancy’ place. Do you sometimes do meals out etc with DS? What have you decided on for this one? Did the GP leave it up to you?

@Ahna65 My neighbour has asked twice now what age ds is going to live in a residential placement. Really annoys me. I’ve said hopefully never and they looked suprised. I think they just assume. They hear all the meltdowns and have come to the conclusion that the solution is a residential home.

I did explain this is the reason why we put in so much leg work now so that hopefully when he’s older he won’t need to live somewhere like that. (I’m aware no matter the leg work you put in it may still happen, but I’d rather stay hopeful that it won’t) I hope he learns more as he grows on how to behave / live independently.

We have always done meals our Ahna but I just find dS is becoming more unpredictable. Also once he has eaten he wants to go. In a busy noisy place that isn’t posh like pizza express with other kids yelling etc and where we can stick the tablet on or get up and move around that would be fine. But the prospect of a silent private dining room fills me with horror! Also very child unfriendly SIL and BIL as I’ve written about before. If there was any commotion they would just sit with eyes like saucers champagne in hand and say something like ‘but what is wrong with him?’ Whilst topping up their glasses and giving each other looks.

I have changed my mind a million times on it, he’s in school anyway so decided to leave it and just take DD. Do feel sad about it tho as I feel I’m leaving my family in part behind for s family event. GP are not happy for that reason. So it’s sort of gone to shit and we haven’t got there yet 🙄🙄

@danni0509unbelievable.. i just can’t understand ever thinking it’s ok to ask someone that about their child - even if their own mind goes there it’s such a thing to say. And for a new colleague on the first meeting!! Sometimes ‘friends’ say it less directly: ‘do you think DD will be able to stay living with you’ etc. And it’s a bit like - she’s 4… shall I speculate about your 4yo too? Will she get married? Will she have children? It’s just irritating. But I need to be less irritated!! The list of people who don’t say the wrong thing is very short …

@carriebradshawwithlessshoes yeah private room good and bad I guess - indeed less background noise and such. I think you made a good choice and hopefully DD. An see it as quality time too - try to enjoy it.

Ahna I try and avoid comments I won’t like by not really talking much at work about the DC, does it come up much for you? Generally I find people don’t ask/ aren’t that interested in my DC. If they do ask I just say yes I have 2, DD is 11, DS is 8. A very old 11 and young 8, ha ha. I get ‘oh lovely!’ And their interest is gone and that’s that.

I have had to tell key people more for eg when DS was really unwell after his first seizure but now I avoid talking about both much. Sometimes one of those key people say ‘how is DS?’ And I just say oh fine thank you for asking.

back when he was unwell I remember HR saying ‘do you think you’d worry/ stress may affect your ability to di your job well Carrie?’. 🙄🙄

Your and do… I haven’t my specs on 👓👓

Yeah perhaps a better approach @carriebradshawwithlessshoes . it tends to come up in first intros when people ask oh she’s 4, which school did you go for, etc. Also ‘oh so are your DCs bilingual’ etc. I don’t need to share but I tend to - I think also because I don’t have a friendship network here I quite like being able to with colleagues. Also I guess not sharing might make me feel like I was ashamed in a way - I know that doesn’t really make sense, and your reasoning totally does Carrie. Sometimes it makes them more sensitive about certain things they chat about. It’s a balance tho esp in the beginning, I haven’t let with most on how bad sleep can be , don’t want them to be primed to think I’m going to underperform!

Hope appointment goes well @danni0509
Hope lunch is nice @carriebradshawwithlessshoes I think I'd not take DS as, although he's getting more able to sit, he doesn't really do small talk and hanging around between courses, so it would be hard. I don't know, it's tricky. He likes eating out but not the waiting around bit!
@Ahna65 I can't believe colleagues would ask questions like that, how outrageous! I find it hard as I work in a school and colleagues ask oh does DS go here, then I explain he's at special school. Most people are fine but obviously don't know what to say etc. One lady is fab as she has autistic adult sons and we chat quite a bit. But yes I'm more careful now who I talk to about it than I thought I'd have to be!
We've just had a successful haircut and back home watching some Netflix! Almost the weekend, where we have yet more pumpkin picking planned and a bday party. I'm so excited about Halloween already, I love the day itself so much!!

Not loving carving out all the innards of the pumpkins though!

What you need Ahna is a few colleagues like mine… young, single, out on the town most nights, some straight, a few gay. When the convo turns to ‘so anyone been up to much out of work?’ It’s like an episode of Love Island unravelling. No one would be pressing you about DD being bilingual then 🤣🤣🤣🤣

carrie I probably would take ds if it was family, but it would be on the understanding that (a) he wouldn’t eat anything from there and (b) that one of us might have to take him out or home. I think a private room with people he knows would probably be easier than a general restaurant setting.

danni/ahna sorry you’re getting such comments. It’s never easy to hear things like that.

Wow, that's really positive Danni I wish that I could get DS to spend less time on his ipad but like Open I would struggle with how to achieve that. Can he go on Minecraft and Roblox on his new tablet. It is mostly YouTube I would love us to live without.

Carrie I think that you're doing the right thing. I took my DC to an afternoon tea party for my auntie's 70 last December. And I was run ragged trying to contain DS who was messing with the blinds and saying that he needed to go to the toilet every other minute. Not quite lesson learnt as I am taking him to my cousin's wedding in December (it is pretty informal though and my cousin's sons both have SEN).

Sorry about those really inappropriate questions you have experienced

Has DS's phase transfer EHCP review today. His case officer appeared to have forgotten that he is in yr5 (although she was the one insisting review needed to happen now). I feel exhausted and am meant to be working now but feel like crawling under a duvet. Do you ever feel guilty about what you have to say about your kids. I recounted his recent attack on a chicken at the farm and his aggression towards to DD. I explained that although it is good to see him described as kind to other children at school, sadly kindness is not a quality I often see in him. Just typing that makes me want to cry. Any way basically now we have to wait for 15 February when we will find out what secondary school the LA is naming for September.

And my 2 break up for 1/2 term hols today

@dimples76 sorry caseworker was a bit rubbish but sounds like a constructive meeting. Yes the tricky stuff can be hard to write can't it. I find that youtube caused DS to get severe stroppy and more dramatic behaviours and I think its because the gamers on youtube get so worked up about everything, it really heightens him. So he has an ipad for 30 mins as a reward at school but I don't have youtube on at home. He found the gamers bit in the TV but we've had to say no to the gamers videos because they do rile him up! He likes playing the games though. He's been off his kindle a lot this holiday and preferring to draw, play games, etc. So that's been nice. Watching a lot of Disney plus too though oops! I bought him a yoga ball too which has been great for regulation.

@carriebradshawwithlessshoes that dinner set up sounds a tough ask for a NT 11 year old never mind an 8 year old.

Still here Dd at 11 is bored to high heaven so best plan re DS!

Good call then carrie!

Had one of my afternoons thinking……. 🤣

Has anyone yet broached how babies are made? Ds thinks you swallow a magic seed. (He thinks the shop is in Leeds and you go to buy a seed that costs a fiver 🤣)

He’s still so very young in his mind.

Completely believes in Santa and the elves and the tooth fairy, still watching the clangers and hey duggee etc.

Im not sure what age he should know about the babies situation, (he’s 10 in January) and more so, how do you explain to a child like ds, as he’ll be trying to have sex and talking about it all the time, telling his teachers he wants sex with them etc. This will 100% happen. Lol.

I need to be v careful on explaining, he doesnt know what sex is, he doesn’t even know the word exists. But at the same time he needs to understand things and learn about things. How are they ever supposed to live independently if they aren’t aware of everything about the world, I don’t know if he’ll ever be at a level to have sex (gross!!!!!) but he needs to know about safety and natural things about how babies are made etc.

Ive spoken to him about puberty, told him he’ll get hairy parts and sweaty pits and a spotty face and his voice will change and his bits will grow and he’ll be extra moody, I’ve explained girls have periods and grow boobs. That’s as far as I’ve gone up to now….

I swear to god my mum never taught me any of this shit.

We've said that when people love each other and get married, they can do a very special cuddle and have a baby.

Ok thanks @ElizabethBennetsBoots i always think ds is way behind certain understanding because I shelter him too much. I really do shield him from as much as poss, but in doing so I wonder if I’m helping in the long term. Hard to know what’s best, but I know ds and his personality and he doesn’t just leave it there, it becomes main topic and he will embarrass the actual life from me. He also doesn’t have a standard 10 year olds understanding.

I read a thread on here recently and their bloody 5 and 6 year olds knew babies were made from sex.

I was thinking Jesus, ds will be on his way down to Leeds on his 18th birthday hunting down the magic seed shop 😂😂😂

Funnily enough danni, we have been talking about it a bit. A few weeks ago ds saw the words sex education on something and I had to explain what it was in broad, factual terms. He’s also been looking at his baby pictures, and we had a new baby in the extended family, so we’ve talked about bits and pieces a few times.

So hard to balance everything. Like you, I’m a bit worried about ds being inappropriate. He hasn’t asked specifically how the sperm actually gets into the mother (ie piv). I think we’ll just try and drip feed it as he asks and it seems appropriate.

I read the thread about the poor poster whose ds had touched her dd and I’m keen to try and teach ds more about consent too.

Yes that’s it isn’t it, it’s making sure they understand boundaries and what not, ds touches everyone’s tits still, he’s obsessed and although it can be brushed off when younger, he’s still doing it, and although still inappropriate when he was 2/3 it’s an actual offence when he’s older. So hard isn’t it.

I always explain about private areas and no one is allowed to touch them, and that goes for anyone touching his private area too, other than when someone is helping to wipe his bum after the toilet. (Still working on that one!)

Yes, definitely about protecting them as well as others.

Thankfully ds wipes himself now, though we still sit with him while he bathes. I’m trying to put more boundaries in place, at least at home, about toileting in private. More difficult sometimes when out, like at the swimming pool today when I had to take ds in with me. I’m not leaving him outside the cubicle by himself.

dimples does that mean the meeting shouldn’t have been needed until next year? I know if can be tricky when dc are deferred. Have you told them the specialist school you want named at this stage?

Elizabeth ds loves our yoga ball too. He uses it much more than the indoor trampoline.