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

So many congrats @dimples76 !!!

will have to fill you all in on a terrible day at some point soon- but for now, opening the wine and letting this be dimples’ day :-)

Thank you all and tell us about your day Ahna. I am not even having an alcoholic drink as I am so tired I already feel lightheaded! Can't really relax and enjoy the moment as DS is being v trying. I ordered a takeaway as a treat but DS threw DD's food on the floor and stomped on it for good measure.

Oh no dimples, hope a solution was found???

what’s happened Ahna?

im feeling a bit rubbish, a very funny throat thing, I’ve totally lost my voice which some may say isn’t a terrible thing….

Yes, Carrie, I shared my meal with DD! Hope that you feel better soon.

Aww @dimples76 that sounds like a crap eve.

we went to DD daycare as they wanted to celebrate her bday (a day belated but today was the day that worked for agendas). I knew it wasn’t a great idea, also just for her not really enjoyable / needed, but I didn’t feel we could say no without looking like bad parents.

when we arrived I could hear her crying hard already and sure enough it was the beginning of a meltdown. I know from experience there’s nothing to be done when that starts, just has to burn out over an hour or so. Anyway they rigidly went ahead with the bday celebration, singing, a hat, etc etc - it was horrendous she was just screaming and I nearly cried too. They sent me photos and videos after. Then they sent a message basically criticising saying it was clear we hadn’t communicated Well to her / she wasn’t expecting us - like, what?! For a start it’s not clear she has virtually any understanding.

it just all made me feel like crap. I’m used to plenty of ppl in my life not understanding why bdays for DD are not ‘normal’ but feel pretty let down from the daycare trying to push it that way. It’s kinda indicative of their vibe of never really wanting to acknowledge that things are different and just be positive about everything. Hard to describe.

sigh. Weekend can only improve…

@Ahna65 reading bet the lines on that one they realised they had messed up and had to go on the defensive to justify themselves before you or DH told them they had messed up. It was a bad idea and they should have known that. Do something DD will like and is right for her… a swim etc. I agree poor on their part but completely a defensive response imo. I’d reply shirtily and then yes forget it. Hope you do something nice over the weekend x

Oh Ahna that sounds painful. I feel for you, and that message from daycare was totally inappropriate. I agree that they have gone on the attack as a form of defence. Hope that the weekend gets easier.

If it’s any consolation I think this would have thrown a lot of DC too! I don’t think it’s uncommon for children to not really want their parents appearing at school. SEN or other! It was DDs party at the weekend. Parents dropped, some stayed and DD commented how much better the kids all are in school without parents!

Congratulations on the thesis, dimples! Sorry about the stress afterwards, though!

Ahna I'd be frustrated with daycare too. Hope you have a peaceful weekend.

DH and I managed a long weekend away, with my parents looking after the children. I was so worried about DD1, but she was brilliant, they didn't have any trouble. DD3, on the other hand...

My parents go back to NZ on Monday after staying with us for two months (with two weeks away in the middle). We're all going to miss them so much. It's been interesting seeing how DD1 has been with them. They're quite strict and she has been fine with it - in a way that she would never handle with us.

Grouchykiwi my brother and family live in Oz and the goodbyes are just the worst. Sounds like you have had a great time.

My pamper day at private pool & sauna followed by lunch with my Mum and sister was perfect. Just what I needed. Back to work tomorrow and a whole lot of tasks I put on hold whilst finishing up the thesis.

It is 'break the rules day' at the DC's school today. DS was v fizzy this morning. I won't be so relaxed when we're reunited. I can't believe it's the last week of primary (and mainstream) for DS.

How are you all? I feel like a spent force. The last fortnight has been a lot (my Mum's cancer appointment, submitting my thesis and preparing for DS leaving primary). And tomorrow is DD's whole class party ...

DS's last day at his mainstream primary went well. They created a lovely book with photos, drawings and messages - made me bawl my eyes out last night. Today his classmates joined hands to form a tunnel to walk through whilst they chanted his name. DS looked so happy. This evening he has been very subdued and told me that he does not like his new school and wishes that he could go back to his old one. Not nice to hear but really great that DS's ability to articulate his feelings is getting much better.

I wish I could fast forward to after DD's party tomorrow..

How sweet from his classmates, dimples! It is good that he could tell you how he's feeling about this big change. Hopefully with a bit of time he'll settle into it.

All the best for tomorrow. My idea of hell. Hope it goes well!

Took DD1 out into town today, just the two of us. I intend to take each of the girls out with me on their own once a month but have been very lax at it. Realised recently that with DH working from home on a Monday and Friday I don't just have to do it on a Saturday (duh, took me far too long to work that out!) so I'm catching up. We had a lovely morning, good food at a café and some fun window (and actual) shopping. DD said it was one of the best days ever, which was cute of her. She found the crowds and noise a bit hard to cope with, but did well at staying relaxed and letting me know when she needed a break, or to find somewhere quiet.

There's a teens' book club that happens fortnightly for home ed kids in Edinburgh, so DD is going to try to get along to that after the summer break. I'll go in with her on the bus, then all the adults have coffee together while the kids chat in the library. Would be really good for her to do that so I hope she does!

That sounds like a lovely outing Grouchykiwi.

I survived DD's party - actually it seemed to go well. DS has been rather challenging the last few days. Always seems a bit tricky at the start of hols...hopefully things will settle down. How are the holidays for you all?

In Croatia atm!! All going very well, the kids are loving the sea, pool, sun etc! Chose a v un touristy area which is beautiful and v unspoiled, DS so much better in this environment, really chilled and regulated. Went parasailing with DD yesterday which was fab.

post more when home, hello to all!

Sounds wonderful Carrie. Enjoy the rest of your hols

Glad the party went well, dimples. Is the weather nice where you are? We've got sun (or at least dry weather), which is very helpful. The kids are more relaxed when the weather is good.

Enjoy your holiday carrie! Sounds fabulous.

Belated happy birthday to dd dimples. Will post properly tomorrow.

Ahna I thought I’d posted about your school experience re. dd’s birthday. How awful of them, carrying on after she was distressed. Is she off for the summer now? I hope the change in routine isn’t too difficult. Ds didn’t used to like the happy birthday song when he was younger.

carrie belated happy birthday to your dc too, I think their birthdays are very close. I hope Croatia is still going well.

Grouchy the book club sounds good for dd, has she been yet? I bet you’re all missing your parents.

dimples ds’ last day of school sounded so lovely. How did his sessions at the new school go?

We’ve had a pretty quiet week. Ds had a swimming lesson and I also took him again today. He’s had a haircut and we went to the garden centre. Off to the cinema to see Despicable Me 4 tomorrow.

hi all. We've been away too hence the delays in responding

Hope everyone is doing OK - @dimples76 DS' last day and DD's party both sounded like a success. @GrouchyKiwi hope you're settled back into your rhythm with your parents gone and it's not too sad for you - must be hard having those intense pockets of time then big gaps.

Our holiday was very mixed, as we expected I guess. DD absolutely loves swimming so we did that probably 4 times a day.. combination of indoor pools, outdoor pools, mountain lakes... we were in the Alps so relatively quiet versus beach holiday I guess, but we still did encounter quite a lot of judgement and some unpleasant comments. Also harder to e.g. discreetly change a nappy now she's bigger - things like that just more practically difficult and getting more unpleasant looks.

In some cases I fully understood why people were not thrilled as e.g. DD bombs into the pool over then climbs out, and does this (I am not exaggerating) more than 100 times. Generally we only let her do it when pool quiet but then if someone comes along it leads to a meltdown if we stop her. She also had several meltdowns because she couldn't go swimming - even if we were just back, if it was the middle of night or early morning,etc.. Coming to us with a bathing suit / towel and then just absolutely losing it. I honestly think she would be happiest if she could literally exist in water!!

Sleep was not the worst - about 3 really terrible nights out of 10. Evenings were harder, she was very much present with meltdowns every evening without exception. So we did not get to rest or connect as a couple in any sense. Took it in turns to have pockets of time alone - I went running a lot.

Typically when we've been away she's been pleased to be home but this time she seems more disregulated than ever. i think we both feel totally out of our depth at the moment. It's becoming so physical and the level of meltdowns is just so so draining, feel like we are on high adrenaline all the time. I honestly don't know how we can keep managing with this sort of life - do you guys relate to that feeling??

Took DD2 to nursery this morning and when they asked how holidays were she said 'DD1 cried a lot' :( - although I know that DD2 did have a really good time.

@Ahna65 people actually made comments??! Like what? Did you reply?

it sounds really difficult. I think it’s so much harder when you don’t have that communication line either. DS doesn’t present like that so I don’t probably fully appreciate. When he’s dysregulated or can’t have what he wants it’s more a general whine than a meltdown. That and the fact that he is small means looking after him is not that physical. Well it is if he runs off but not with wrestling him day to day if you see what I mean.

i don’t know what to suggest… respite, medication? Posters on here write about things like risperidone which they say helps, I find it completely baffling that the expectation from professionals is that we just get on with it. A friend with a severely autistic child sent me a WhatsApp of them mid meltdown the other day , as I watched, my cousin was there (no nd experience) and said well what are the drs doing to change this? I said well nothing. She said but they can’t just leave him like this? People really have no idea do they but yet in a way I see where she’s coming from. The lack of help/ support is just abysmal yet for other health issues it’s in abundance.

Yes @carriebradshawwithlessshoes the NV aspect really feels impossible sometimes, doesn't it. We really don't see to move forward with communication strategies however much we try. Which I guess just means she gets louder and more frustrated. And it feels then like the only two options are to ride out the meltdown (often this is the only option if it is the night or whatever) or accommodate whatever she wants, if we know what that is. On hols that did mean letting her go swimming all hours of the day, and at home can mean going with her on the trampoline for a long time, but it gets to the point where it feels out of control. I remember ages ago @danni0509 saying that her DS was controlling, more with words, but I do feel atm that DD is somehow very controlling

Yeah, maybe medication is the way to go (if offered). We have another appt with that doctor we were seeing but I think it may be a sort of closure appointment saying he's out of ideas. We will see. And on respite, think we are moving closer to doing that. And just to tap into more of a support network if possible.. beyond the nanny and MIL, to have a few more people in our lives that can give us a little bit of a break I guess.

Re what people said: a couple of kids asking parents e.g. what's wrong with her, and parents saying variations of 'I don't know but just keep away' or 'some kids are badly behaved' - and in all cases just moving away as quickly as they could from us !

Happy belated birthday for DD @dimples76 and hi @openupmyeagereyes
Glad the holiday had good patches @Ahna65 I think there is so much ignorance in the world from NT parents isn't there, who just pass it to their kids. I would just say she's autistic actually, but I know it's not always easy. @carriebradshawwithlessshoes yes totally, an old work friend asked me the other week about DS' diagnosis then she said oh you got support after the diagnosis though, right? Like, not really! All the strategies and approaches we use that work well were things we found out about ourself, we even represented ourselves at the school tribunal to get DS into his special school! I will be forever grateful to ipsea and the PDA Society!
Took DS to his appointment today re puberty. They were v thorough and he is tired out now, but everyone was so nice, and things seem normal. Apparently in some children, the body carries out like a puberty test run with adrenal glads so you get the hair and sweat smells but it's not full puberty so...will see! V relieved so far.
It's too hot for me today! DS has fortunately decided to stop trampolining in the sun and has come to watch cartoons for a bit! It's meant to get hotter tomorrow eekk...we are swimming too, but not till Fri. Three weeks tomorrow and we'll finally be on holiday!!

I know how you feel Ahna re the don't know how long we can keep going like this ..With us it's DS's aggression. Yesterday was DD's birthday and by 10 am DS had already pushed her over, bitten her on the back (that's a new thing) and the next door neighbour had been around to complain about the noise DS was making. Fortunately, the day got better after that. We went to Diggerland and as we spun around in the Spin Dizzy with DD shouting this is the best day ever I thought there is so much to be thankful for ...However, I find the constant vigilance required to protect DD, me and the house (and animals and his younger cousins when we're with family) grinds me down.

We have a lot of public loud meltdowns and attacks and far too many people pass comment. I think that the majority intend to help ...eg saying to DS ' you mustn't speak to your mam like that' or 'you must never hit' etc but their interjections normally add fuel to the fire. Or they stay stuff to me like 'he'll probably grow out of it'.

A colleague phoned me earlier (even though I am on annual leave). He was shocked to hear how DS was carrying on in the background - like a lot of people he has only ever seen the charming/cute side of DS.

ElizabethBennett'sBoots I have forgotten how old is your DS? Does he understand much about puberty?

@dimples76 he's almost 9. He understands the changes but not talked much about everything else yet (although I've started to see his eyes glazing over when he sees a pretty girl!)