Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

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!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

Jabberwockky I am so frustrated for you. How can they finalise a plan with no provision for education?! The system is bonkers. What are they saying about the school with 1 place left?

Arghhh ds needs antibiotics. They have prescribed the first line option and it’s vile, ds spat it everywhere and refusing to have any more. The doctor did say there were other options and I’ve called the surgery back to try and get something different.

I’ve got to get him to take something 4 x per day for 5-7 days. Wtf am I going to do?

I mixed it with some custard, which he doesn’t eat. It was still awful but more of it!

Do they still do the pink stuff?

Jaberwockky have you heard anything today? Sorry this is all so stressful for you.

Hi everyone, I'm new here! My 10yo DD had her Stage 1 assessment yesterday and has been recommended to progress to Stage 2 as she 'ticks all the boxes'. Does anyone know how likely it is for her to go through the Stage 2 assessment and NOT receive a diagnosis? Are there any stats available anywhere?

Hope that you were able to change the meds Open. DS has always been good at taking meds but the antibiotics he was prescribed last year were all spat out - I inadvertently tasted it (spat on my face) and it was truly vile.

Jabberwockky I hope that today brings better news

Open ds is allergic to penicillin and has to take erythromycin which is disgusting, he’s good taking most medications (apart from his adhd and anti anxiety med, which I put in a drink) but with erythromycin I put it in fresh orange juice, hides the taste, although he does now know if a medicine is in his drink. I say either take it off the spoon or drink it from a drink but either way it’s got to go down. He chooses the drink.

Could you mix it in a drink?

Ds breaks up today.

I’ve found out from taxi this morning, that from September the taxi company he has is switching, so new company, new driver, new Pa. Are the council genuinely right in the heads? Probably to save 25p a day or something ridiculous by changing providers.

I don’t know nothing about the new company / driver / Pa, they know nothing about ds, apparently I’ll get a letter during the summer with contract details, so I’m going to need to phone them and the transport team.

They cannot just rock up for ds on the first day of term knowing nothing about him, he’s given the taxi’s and 12 PA’s he’s had 🤣🤣🤣 2 years of problems. They absolutely will not know where to start.

So fucking annoying.

I genuinely do mean it when I say, the taxi and PA’s don’t know what to do (and I don’t blame them how feral ds is)

His school have to go out and get him in his harness, they have to have several staff members some days to get him in. I have to help in the morning, he’s kicking off spitting at them, they won’t let him in the taxi with his shoes on or he takes them off and throws them at the driver while she’s driving, he’s been shoving the harness straps down his throat and purposely making him self sick in the car. He’s picking his arms and writing his initials in his blood all over the taxi interior, this is just shit from the past few weeks, he’s never behaved much different for the taxis over the 2 years, the incidents we’ve had, and he goes through pa’s like he does fruit shoots lol.

So Im absolutely dreading a new company, rocking up barely knowing anything about him or his specific needs. x

Nothing yet @dimples76 and @openupmyeagereyes . Neither his current school, or to be honest, anyone is responding to anything. Sorry open - not a chance to reply fully, but it’s an hour a day led by DS. He’s in a class of 35 with a full time 1-1. He spends around half of of his time there sobbing under tables, overwhelmed, head banging, being aggressive if anyone tries to go near him, it’s just too chaotic for him. That said he has good and bad days, which is why we’ve kept sending him.

Trying to look at the positives - the DC are off to my parents for the week, so DH and I can spend some time together. I cancelled the hotel we planned to stay in as we were going to go away, but to be honest don’t feel we can’t justify the cost. It’ll still be nice to have some time alone together without the kids though. I’ve stuck up an advert for for an au pair, I don’t know at this point, I’m just trying to be practical as if I get emotional about any of this it’ll just end with me in an absolute state again.

danni he only drinks water so nothing to hide it in really. I’ve got to pick up some kids amoxicillin today, I think anyway. If he won’t take that we’ll have to try tablets.

Sorry about the taxi changing, how stressful for you.

thirdistheonewiththehairychest I can’t help re. diagnosis as ours didn’t work like that. Hopefully someone else will have some knowledge.

Jaberwockky I hope you can relax and reset this week without the kids.

We had a play date today which went well. So nice to be able to just sit and chat with my friend after so many years of having to watch and hover. Hoping to do a local event this weekend but it depends on the weather as it’s outside.

I’m actually sitting watching a film while ds has screen time. It feels like I’m skiving.

Open I am glad that you have found a sliver of downtime too.

Jabberwockky hope that you and DH can relax a bit - but it's hard to switch off

Danni how frustrating re the transport.

DS breaks up today. My out of office is on for a week. I don't think it will be v restful especially as DS has expressed his desire to help me paint the living room. At least I can blame and poor Paintwork on him ...

He has taken the new medicine, thank goodness.

dimples I hope you have a good week off.

Hi all. I used to like certain Finnish troll like creatures but have name changed to keep fresh!
@dimples76 good luck with the painting.
@Jaberwockky i hope you get some time to recharge too.
@openupmyeagereyes yay re the medicine.
@danni0509 nightmare re taxi. Our LA tender the contracts most years so they often change, total nightmare for the kids and you're right, they likely don't sacs much money compared to all the stress on the kids. Grr argh.
Went to a show yesterday. Was so excited but it was a bit meh and train strikes made the journey long. We're fine, pottering along despite all the rain. DS has mostly stayed in so far and I've kept the holidays mostly chilled out with a few activities spread about. I'm starting my dry idea again as I'm very sober curious, I don't drink much anymore anyway so when I do, I feel terrible for days after for only having a couple of wines! It's feeling not worth it. Although i couldn't stop reading till 1am this morning oops! Hopefully have a low key day today. Need to retune the TV as DS' fave channel has disappeared and he's quite taken aback at the change!

I wrote a long reply earlier in the week but it got wiped. So now I’m sure I will miss so many people but I have been following and thinking of you all, and hoping for good news on the plot for @Jaberwockky .

taxi situ sounds rubbish @danni0509 sorry you have to deal with that - fully understand your concerns with the school more generally too. I worry about the approach of just grouping lots of issues / disabilities together, I’ve even seen schools here going one step further and grouping age groups (one near us we decided against because there were literally 4 and 17 year olds in the same group).

@openupmyeagereyes is DS feeling a bit better?

@dimples76 impressed by all your activities for DS sounds great. Hope they are a success

DD had a vomiting thing the past week so was rough. She gets hit so hard by these things and fever, when other kids maybe have a funny tummy for a day. And sad to see her so passive. But she seems better now although has had some absolutely huge meltdowns, just won’t stop crying and there’s nothing we can do. In good news we did find a nanny but she hadn’t really started before the illness so hoping the coming week goes well. She’s in her 50s and has experience with kids and also music therapy that type of thing - seems like a very warm person. Found her through a SEN agency after being on their books for months and months.

another curtain destroyer here - it’s not a rail as such but attached to the ceiling- just about hanging on and I’m reluctant to fix as I know she will do it again (twirls to wrap herself up)

hope everyone had an Ok weekend so far. And start to hols for some of you.

Hello 👋 Mum of a DS with autism here. Nice to have a community to connect with.

Anyone have any experience of moving their DC from mainstream to SEND school. My DS will be going into Year 5 mainstream but is finding it increasingly hard going. Noticeable increase in behavioural incidents recently which we think are triggered by anxiety. Starting to wonder if SEND school would be a sensible option. I simply cannot see him coping in mainstream at secondary level. We have a meeting with the school in Sept to review his EHCP and I think we need to pitch it much more at SEND provision. Any words of wisdom appreciated.

Ahna ds isn’t ill really, it’s a localised infection that was starting to spread. It already looks like it’s clearing up. I’m wondering if that would have happened without the AB’s but pharmacist and GP both said they were needed.

The new nanny sounds promising, I really hope it works out.

dressedforcomfort several of us have moved dc from ms to specialist provision, though at a younger age than your ds. For some it has been the best thing, some struggling with whether the provision is correct. My ds is still not attending full time despite being in a specialist autism school now.

ElizabethBennetsBoots you don’t necessarily need to be tee total if you don’t want to. I don’t generally drink alcohol but will have one or two occasionally if I feel like it. I certainly couldn’t drink regularly as I’d feel dreadful.

Hi @Ahna65 sorry I missed your update!
@dressedforcomfort yes we moved DS after mainstream spectacularly fell apart z few years ago, but he was younger. I've found that he is generally thriving in specialist provision but his pda means that he finds any school environment hard sometimes, even low demand ones. It worries me a bit that he is far cleverer than any of the other children in terms of growing older and gcse options etc, but we have chosen to focus on emotional regulation and social skills for now, and rebuilding his self esteem.
Oh, and although he was on a part time timetable and out of his mind with anxiety, the LA still tried to claim he was fine in mainstream, so be prepared for a fight. We won at tribunal so it is possible.
@openupmyeagereyes yes the issue is that I love the taste of a really good shiraz or malbec, and saying never again feels too final and too much like a demand. But it makes me feel so bleurgh even when I go yo bed, I can feel just a glass affecting my heart rate etc, then so sluggish the next day. Will plod along and see how I go.
We're off on a nature walk soon hopefully before the rain comes.

ElizabethBennett'sBoots I hope that you had the low key day you were after.

Ahna that's good news re the nanny

dressedforcomfort my DS is also about to start yr5. I am in the process of trying to move DS to special school and currently chasing the LA for an answer. I am expecting to have to appeal but at the moment we're in limbo as we don't have a decision to appeal. I had wanted to move DS sooner but his current school were adamant that they could meet his needs. They have now stated (to the LA) that they can no longer meet his needs.

We had a v wet day out to our local open air museum. We had a pretty jolly time with my sister and her boys despite the incessant rain. It feels like I will never start painting as I am trying to spring clean/declutter the room first. It is embarrassing just how much stuff we have. The car is fully loaded for trips to the charity shop and tip tomorrow.

Apologies for not replying to individuals, but have read all your updates and generally send a lot of 💐 and ‘yes I get it’ and 🍷! I get migraines if I drink, but once a month (or more!) I just need to have a few glasses - I find that I don’t even realise how ‘wound up’ I get - I think it is partly having to hold so much together being a SEN parent. It’s constant. And sometimes just a couple of glasses of wine I think… so this is what it must be like to just have no anxiety and not have ‘must do this… react to DS… constant vigilance to prevent meltdowns/school refusal or whatever’! It’s a couple of hours of bliss!

Then I wake up to a two day migraine… 🙄 worth it almost!

The taxis and the constant changes - yes DS has had a new helper and taxi every single year, with no warning, no chance to speak to either of them even for 10 mins on the phone beforehand. It’s so stupid really, so many weak points in the ‘system’. And then on the morning, at the start of a new year with all the anxiety that our kids have, to have to content with totally new clueless people! It’s a bit of a joke.

I wish MS schools would hold up their hands to not being able to meet kids needs sooner - not when they get to crisis mode as it takes so long to sort out a suitable alternative. Or at least there could be an alert system with ‘possible’.

I’m sorry DS has always been in specialist provision, so I don’t have experience of moving from MS to specialist. But what I can say is that DSs emotional experience has been pretty OK with school, he was/is very demand avoidant. And it has stabilised him.

Now I’m looking at some kind of hybrid ‘mainstream’ / specialist which doesn’t seem to exist, as DS needs more academic and learning stimulation. But he is only able to do that because he’s had a bedrock of feeling OK in a school type setting.

Hi everyone, new here. Have a DS age 4.5, diagnosed with ASD. He starts school in September. He's going to mainstream which I do feel is the right choice but I'm anxious about it all the same. Any words of wisdom for the transition are welcome. Though I am having a much harder time than DS who couldn't be more excited about starting school.

Hi all and welcome.
We're OK, went our yesterday to a 'relaxed' museum event but it was so badly done. E.g. take a fidget toy from the table DS, no only one, no that one has to stay here etc. Soon much choice, it disregulated him before we even got up there! Then as soon as he got a bit loud, the looks started...I mean, I felt like the whole thing was a box ticking exercise to get some community engagement funding,and like we weren't the right kind of sen (I.e. quiet anxious kids who display their anxiety quietly in the corner without bothering anyone). Urgh, so disappointed as it was billed as being really inclusive. Still, DS coped well and we went for a walk round the town after and had a macdonalds. Got caught in the rain though. Stayed in today!!

@Mumof2littleguys1 hi 👋 good luck with the school transition. I'm not the best person to talk about mainstream due to our horrific experiences but I hope it all works out well for you.

That’s disappointing Elizabeth. Was it the big museum in the nearest city to us both? I’m planning on taking ds there soon.