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

Elizabeth good luck re. ds’ tests. Glad you’re feeling better.

dimples professional reports can be so hard to read but they’re naturally one sided.

carrie did you make it to London?

NameChange30 how are the glasses going?

Oh I almost forgot. We had a big drama this week when we had to implement a change for ds. I won’t go into the details but he was very upset about it. In the past this sort of thing would have resulted in violence and talk of killing us but this week he was only angry without any of that. It’s a massive achievement for him and I’m really proud of him.

In other news, this morning while he was talking about something he said “the b-word”. I’ve never heard him say this word so I asked him what the b-word was and he wouldn’t tell me as he’d get told off so I asked him to spell it (‘b i c h). I said I didn’t think he knew that word, where had he heard it? At school, of course. I asked if he used it at school and he admitted to sometimes, then ‘rarely’. So that’s nice!

We are still on week 2 of the Easter hols. It’s been a mixed bag so far and as per other comments I always approach holidays with some trepidation mainly because a lot hinges on DSs mood which may be linked to something understandable (illness) or may be unfathomable. @Ahna65 when you talk about DDs meltdowns are you able to predict them or know why they happen? I think however unusual the cause it must be wonderful to have that insight ie he doesn’t like busy places so let’s avoid x. Often I would say DS just has mood issues rather than meltdowns, so can he doing his favourite thing and is still moaning. It’s just an absolute uncertain and that makes me feel like it’s a potential ticking time bomb any day of the week. Or it may not be. I just really don’t know.

the epilepsy drug he is taking now is actually a bi polar med too and although I’m not shouting it from the rooftops I’m hoping that side of things may be beneficial for DS. However he’s so sensitive to drugs, the first week of the hols was one looooong moan. Cue call to the consultant who thought this med may be interacting with one of his sleep meds so we reduced that and things have settled. However he’s so off the wall, latest ‘party trick’ which he finds hilarious is legging it at break neck speed to the shower, jumping in and turning it on. It’s exhausting and obv comes with a degree of hassle. It’s ‘progress’ in that as a younger child he had no interest in or even acknowledgement of the shower but after the 50th time it’s just ridiculous.

i find myself thinking a lot… how do you teach them to just not do this because this isn’t how people behave????! There’s a lot about written about doing something to stop them, physically, so I guess a stair gate or lock on the bathroom door on the outside or something, but that’s not teaching them, is it?? When you tell them no and they just laugh their heads off and do it again and again… can you teach anything? Because I really don’t know how! I’ve worked this hol so he’s been with family and I know stuff like this is driving them mad too.

anyway there have been some good days too. Out today at some rhs gardens, now finally settled to watch tv (though I’m keeping an eye on him as he’s so bloody quick.)

London Friday Open!

@openupmyeagereyes glad you’ve seen progress re dealing with a change, that’s great!!

@carriebradshawwithlessshoes sadly can’t really predict the meltdowns no. Im
sure there’s a sensory component but it def isn’t as easy as noticing loud place or anything like that. They often happen at home which I guess is her safe place to let it out but makes it hard to identify the cause. And they can happen in the night soon after she’s woken which also is hard to figure out - in both cases I guess something earlier in the day

hope London trip goes well!

We're away at the moment. Fun so far except stayed up too late last night with DH! We have a really nice balcony with street view.
DS coped v well with the travelling but I could tell he was anxious about sleeping in his own room. He went to sleep eventually though.
@carriebradshawwithlessshoes I find that if I put physical barriers then my DS thinks of it more like a challenge / game so makes it worse. I think age has helped as he's now more able to understand why not to do something (e.g. splashing the bath so much) but I still keep an eye. I pick battles as well so he's just been sat here pushing a rug back and forth moving a little table, which I'd annoying me but actually doing no harm, so I've ignored it and he's stopped. I find thr more i do that with little things, the more regulated he is about the bigger things. If I tell him off for every thing that annoys or irritates me but actually doesn't matter, its like it builds up inside him and he sees me as this enemy type person so he wants to get control back. I know it's not quite the same though as you can't let DS go mad with the shower, but is there a way maybe of doing visual supports to show him how to shower properly? So when he runs to the shower, he knows to take off clothes, get in with a preset temperature, then say OK DS 5 minutes and set a timer? Maybe he just likes the feel of it?

@ElizabethBennetsBoots yes I relate to a lot of that re the making it more of a laugh if I put physical barriers. He does like the feel of it I think, yes, you sort of see why. Hope you are having a lovely break, it sounds fun. Are you in this country?

dimples I didn’t say either how impressed I am with your thesis, I can hardly string a sentence together nowadays on the email 🤣. Hope everyone else is well too.

@Ahna65 we went with your suggestion re staying out of London and getting the train in in one of the places you mentioned. I’m bloody useless in London I have to say, trying to work out how to QUICKLY get through the tube station on to the right line etc. I fear I’m the worst of the tourists but let’s see 🤣

Ah yes the tube can be intense for anyone! Just take your time , hope all goes well!!

agree @dimples76 what an achievement. You’re a superstar ! I hope the DCs are proud or will be in time even if they don’t fully understand now.

The tube can be overwhelming but outside of rush hour people are usually pretty patient so unless you have your own reasons for being quick you don't need to. Just make sure you don't stand right in front of the barriers to find your ticket/ card and I generally find the ends of platforms a bit quieter.
We're all ok, holidays are going surprisingly well though now all have colds so a quiet day today.

I decided that we ought to get away for a few days as I was going stir crazy. Turns out it wasn't the best idea I have had. Things just got worse and I have spent money I don't have. The children did enjoy some parts of it - particularly swimming at the hotel (both oblivious to the death stares we were receiving from adult swimmers). I think that in the right mood DS would have loved the National Space Centre but we had bad luck on the drive and so it was all a bit too much. The weather was terrible - their favourite day was spent at soft play, cinema and tea at Brewers Fayre with more soft play (all of which we could just have done at home).

Carrie good luck in London. Can you look up the tube lines now and write a note for yourself- that's what I do for my Mum.

ElizabethBennett'sBoots your comment re letting it go re moving the table struck a chord. For me, I really try to let those things go and if I can't it makes me realise that I am becoming overwhelmed - and also it's the repetition/attrition that gets me. For example, yesterday as I was getting the car ready to drive home DS poured blackcurrant drink into the drinks holder. I didn't notice what he had done when I got in the car and put my phone in the drinksholder. I managed to stay calm, cleaning up the car and phone but when DS started tapping on the dashboard I snapped at him.

Ahna similarly I can't always see the triggers here - or sometimes I can but I don't know how to avoid them. On the drive home we stopped at a National Trust place on the way home - DS loves old buildings. We had a good look around the hall and then headed to the play area. We had only been there a couple of minutes when DS decided that play area time was over and wanted to go to the cafe. Understandably DD wasn't ready to leave. So I told DC that we would have 5 more mins on play area. Total meltdown by DS - hitting me, death threats, name calling (his fave at the moment is 'ugly turd'). After the 5 mins we left the park with DS raging. I told him that we couldn't go to the cafe until he was calmer. He hit me again so I decided just to drive home. Gutted as I had really been looking forward to cup of tea and resumed the drive with DS screaming and cursing me and DD wailing.

@dimples76 that sounds tricky. This poor weather isn’t helping anything, there’s even a mn thread on it, esp during school hols which are hard enough! I think you have a couple of extra challenges.., your DD is the little one so will still have her own wants, whereas my DD would just wander off to do her own thing, also I guess if there are 2 of you one can take one child and the other the other! Such as the cafe/ play area eg. Sometimes I’ve really expected a break to be good and it’s been a disaster and vice versa, just so unpredictable.

Do you often wonder if there is an age when our DC are at their ‘hardest?’ I know there’s lots about a DC with Sen won’t lose that etc but there’s lots we talk about on here which you just don’t see in any adults out and about who are autistic or have LDs or whatever do you? I often think about stuff my DS does and then think I’ve never seen older Dc or adults doing things like this and it just makes me wonder/ hopeful that it may ‘get better.’ Things like public meltdowns (never seen an adult in that situ), running off, grabbing things off shelves and so on. Danni used to say her DH would say all other Dc like that were in residential care so I just hope that’s not the answer?!

thanks for your London best wishes. If this is my last post I’m doing a constant round circuit on the northern line, someone come and help me please! The last time I was on the tube was after DS had had his eeg. His hair was still glued to buggery, stuck up in all directions. This guy looked at us in horror and jumped up to give us his seat so we must have looked bad 🤣🤣. That’s not normal behaviour for the tube is it?? 🤣

@dimples76 what a shame about that meltdown - i really relate to those scenarios where the two DCs aren't aligned in what they want - usually it is indeed DD1 wanting to leave somewhere asap and DD2 still having fun. Tbh most the time I accommodate DD1 because it feels easier but I think increasingly that's not really OK for DD2. Tough.

Interesting on your talk of glue @carriebradshawwithlessshoes just got the EEG appointment through, week after next. Although even reading the letter makes me pretty pessimistic about it working out to get it actually done. DD is just so difficult with her head / hair (e.g. I tried to cut her hair a couple of weeks back as it was a bit out of control and the meltdown was just next level.. had to abort the process and just leave it uneven. It's always tied up atm but not ideal!!). And the letter mentions that it can be very unpleasant and for some children it may not be possible. I think I need to be clear when we go that we do expect a meltdown but we find the data very important... I would expect too that when it was fixed to her head, she'd settle into it. But I'm definitely a bit nervous! We go at lunchtime until the following morning.

Hope everyone has a sunny weekend ahead. I'm running a marathon on Sunday - crazy, I know... But I'm looking forward to it. Running has really kept me sane these last couple years.

Hi all.

DS went to a new holiday club on Thursday, one he had chosen because it was tech focused and he liked the look of the activities - I was pleasantly surprised as he went without too much trouble and enjoyed it, so that was brilliant. Will definitely book again for the summer.

The bad news is that his eye test didn't work at all The glasses weren't right - the optician said that there can't have been enough of the eye drops that went in so they didn't work properly. She said she's not doing it again so has referred to children's eye clinic at the hospital. Apparently they have a disability nurse there and hopefully more experience with administering drops to distressed kids?! So we'll have to give it a go, but it's probably be a few months wait. I was gutted that our ordeal was all for nothing

However, I managed to finish our DLA application and posted it this morning. Big relief to get that done! Took me absolutely ages - and it's so depressing to focus on all the difficulties Fingers crossed we'll get something and it'll be worth it. I think DS should qualify for middle rate care but not mobility... we'll see.

openupmyeagereyes
Well done to your DS for handling that change without violence and threats - I understand what an achievement that is! We get a lot of physical and verbal abuse and this gives me hope that DS might be able to regulate enough not to do it...

carriebradshaw
my DS is similar, moods can vary a lot and he's unpredictable - well, it's all familiar, but can be very hard to know when/whether he can cope better than others. Sometimes it seems that he's Jekyl and Hyde.

dimples
Sorry to trip away wasn't a great success, it can be so hard can't it?! I think it's always worth a try as occasionally it goes better than expected. But disappointing when it feels as if all the money and effort has not been for much.

Ahna
Good luck for the marathon tomorrow - enjoy it! I'm not a runner but can well understand the benefits for clearing your head.

@NameChange30 interesting that your DS is verbal but still can be Jekyl and Hyde, in my probably very naive thoughts a lot of DSs kicking off is because he can’t say ‘I want to go’ ‘I have a headache’ ‘I don’t feel well’ ‘I don’t like this’ and so on. So any upset is his ‘communication’ which is then worsened because I can’t respond appropriately to what is ‘wrong’. I find it interesting that DC who have fluent communication still have these difficulties which blows my theory out of the water.

Sorry to hear the eye test woes… I think this was said upthread but are drops necessary for a vision tests where the DC is verbal and can say what they see? I don’t recall that (they are nec for contact lens checks of course). Still the optician must know! You will get there…

@Ahna65 how was the marathon? One of the many things I marvel about you is how you do so much physical exercise on so poor sleep! Do you not feel too tired? I completely understand how running relieves pressure I know a few people who say that but after a crap night I am quite literally falling asleep at my chair, sometimes slurring my words and stuffing myself with chocolate, I physically don’t think a run would be possible?! Then again you have talked of more DC so you are probably at least a decade younger than me, maybe that’s it?! Good luck re the eeg. You can only do what you can do. Personally I’d be as insistent as you can be that they do it (come to the London hospital they would have pinned DS down in a head lock before giving up!). Sometimes I feel these people do what’s easiest for them (the optician… ‘not doing it again’ … that’s the easy answer isn’t it) which makes me v cross.

London was good, we survived! Weather Sat was glorious and DS idea of heaven is walking his legs off so that worked. He was a bit uncertain about the hustle of the tube but otherwise ok. You forget (or rather I do!) how busy/ crowded it is, at home in our market town you can wander about seeing a handful of people in a day some days! I did (this will make you laugh) keep getting snapped up in the gate things on the tube, now that is QUICK as per my last post! DS couldn’t go through himself so I was putting the ticket in, shoving him through as it opened and then being immediately behind him but it is such a short time to open it shut on us several times. My parents would have no chance, my mother would be faffing with her bags and it would have opened and closed again 🤣.

DD has now decided after a trip to Harrods that the north is very much the poor relation! Leeds and Manchester just not cutting it… 🙄🙄🤣

carrie glad London went well. Harrods is nice, the food hall
especially.

I think with verbal dc it’s that sometimes they don’t know exactly what’s wrong or can’t articulate it. Also when dysregulated, language can be hard to access for some.

dimples sorry holiday didn’t go well.

Elizabeth hope your trip
was good.

Sorry, hard to catch up with all the posts right now. I hope back to school has gone well for everyone. For us, today was an improvement over yesterday but ds has been up half the night so we’re all tired and getting an early night!

Is there a Selfridges in Leeds?

@openupmyeagereyes no. Leeds has a Harvey Nicks only. Manchester is the nearest selfridges. Sorry about the sleep, the day before London DS slept 10pm til 11pm then was up til 4.40am which was a killer for the journey.

Ps yes, we got some sandwiches and cakes from Harrods food hall and ate in Hyde Park, the weather was so nice on Sat. Tbf the prices of those weren’t as bad as I thought they may be!!!

Pps I did blow a (small) budget in Liberty on make up not sold up here. I delightedly put it all on yesterday then spent the rest of the day thinking I looked no different 🤣🤣🤣

Im glad London was a success @carriebradshawwithlessshoes ! Ahh I love Liberty. Used to work around the corner.. that was dangerous haha!

yeah I guess with running it does somehow energise but there are also days I just can’t get out. Even though I did a marathon I guess in a life with more sleep I’d do it a lot faster. But it was a great day, there was an amazing atmosphere , and I felt proud of having trained and having something just for myself was kinda nice I guess. Had to travel super early the next day with work though for a day trip to London then flights cancelled etc etc .. ended up being finally sent off the plane at midnight then trekking across London to a friend with spare room - a very short night without even DD to blame! So feeling pretty rubbish now.

huge meltdown going on in the background now and I find it so so hard. Feel like I’m struggling more than eg 6 months ago with it all. Not sure anything has changed but think it just feels more relentless.

@NameChange30 nice to have a successful holiday club to go back to! Rubbish about the eye test though. Hope it works out the next time.

@Ahna65 you should feel proud, that’s a great accomplishment, well done! Timings don’t matter, you did it and a lot of people couldn’t (me included). Hope DD settles soon x

Ahna that’s a massive achievement, congratulations.

We had a better night. We all went to bed early (including ds) and he slept until 5:45. That’s a win in our house!

Congrats on the marathon, Ahna. That's fantastic.

Hooray for a better night of sleep openupmyeagereyes! It makes such a difference.

Things have mostly been calmer here now that we're working on being low demand. There are still outbursts of violence, but they're maybe less frequent. Overall days feel a bit easier. Biggest challenge right now is getting her up at a decent time in the morning. We had settled on 10am, and previously she was doing well with that as it was a condition of using a screen that she be up by then, but somehow we've let it slide. Need to have a conversation about it all today.

Have a letter from the OT to read today and hopefully get it sent off to the ND team to get on the diagnosis pathway.

Well done Ahna, what an incredible achievement with everything you have on your plate.

Glad to hear that your London trip was a success Carrie.

Open hope that the sleep/school attendance continues to improve.

GrouchyKiwi glad to read of improvements

Namechange30 great news re the holiday club. Not so good on the sight test.

ElizabethBennett'sBoots hope that your hols continued to go well.

I have an appointment with a learning disabilities nurse at CAMHS next week so hopefully that might lead to progress re ADHD meds etc. However, we have an appointment with consultant in a fortnight re epilepsy meds (the plan being to start to wean DS off). So I guess it would be better to focus on that first.

Haven't heard from special school or Transport yet re September. Was wondering if I should contact them but keep remembering that it's only April.