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

ds kicking off currently as he wants to break the Guiness world record and go to McDonalds to eat 30 Big Macs, he genuinely thinks I’m buying THIRTY Big Macs, he doesn’t even eat Big Macs, he’s never tried them, he usually gets 4 chicken nuggets and leaves 3 and a half, lol

ds has a nugget happy meal and eats around two of them. He has sometimes eaten all of them but not anymore.

Ds sometimes tells us he’s going to kill us if he’s not getting his own way and he will hit and kick sometimes. I don’t think he’s a psychopath, I think he’s just immature, frustrated and wants to shock us into getting his own way. Hopefully it calms down by the time he’s 18…

Danni Yes, I think it's the graphic details of his murder plans that get me! But I think DS knows it's not acceptable as he never says it to or in front of anyone else. When I have mentioned it to professionals they don't seem shocked so I think it is not unusual behaviour.

Oh dear the McDonalds ambition seems a bit much. Unfortunately DS is not being fobbed off with happy meals any more as he will merrily eat 6-8 chicken nuggets

How was the cinema Open?

DS and DD have been squabbling a lot today. I wish that it was bedtime already!

DS now insists on a happy meal and an extra cheeseburger!

@carriebradshawwithlessshoes thank you - honestly the school made me feel like I was totally crackers for questioning it. I’ll have a chat with his paediatrician in a couple of weeks. I just don’t want to use up resources that another child may really need.

@dimples76 erm, stressful to be honest. The school we went to last week feel they can’t meet need. A school we saw last year when DS’s circumstances were very different have said they’d like to reassess tomorrow as they feel they now could meet need, and have spaces for September. I mean… they could say yes and the LA could say yes and it could all be sorted by Friday… yes? 😩

We’re trying to find some sort of solution for September as we can’t see DS being in school. On a plus note the ombudsman is upholding our complaint, so waiting for an outcome there. Our EAT worker has advised to hold fire on escalating to a tribunal until we hear what they’ve said as they’ll likely force a school place anyway. It’s just when.

DH is away at the moment. DS has taken the opportunity to find a few further words and is seemingly convinced ‘daddy hates me’ which is been wailing while sobbing and is really difficult to console. DN has quite severe attachment issues and is pretty much an 18 month old DS equivalent. It’s going to be a fun week 😁

So, sorry to be a bit thick on this one, but why and in what circs could a SS say they ‘can’t meet need?’. @Jaberwockky why did the school you saw (presumably a SS) say that about DS? @MoominMamasTribe , what was the reason for your friends child? I would have thought most ‘general’ SS that have a variety of different children would be able to meet need for any SS child, would they not? Save for I don’t know an intellectually brilliant child being placed in a ‘low functioning’ school (if that even exists). Or vice versa. @Jaberwockky I would have thought DS would fit into any good SS would he not?

My next qu would be (@MoominMamasTribe ) like with your friend, does a current SS have to say they CANT meet need for an EOTAS? Is that a necessary pre requisite? If what I’m saying above is right, one may think that there are hundreds of children in general SSs where technically the school can meet need but they would do better in say an EOTAS situation. Does this mean they are then barred out of that opportunity? Of course school may continue to say they can meet need to just keep getting funds! I find it very complex to understand the ‘can’t meet need’ palaver.

All fine here, one week to go. Since I last wrote DS has become a lot more accustomed to the iPad with a combo of words, sentences etc and I’m getting a lot more out of him. He’s told he several times this weekend that he doesn’t enjoy school, his TAs are ok but he doesn’t like his teacher who isn’t nice with him. Open and Danni, in view of the recent incident I highlighted it’s making me wonder if there’s any truth in that. She’s leaving next year so it’s not an immediate concern but has just made me think a bit.

carrie I’m not saying this is the case with any of our dc, but there are SEMH schools that can be more suitable for some children with more extreme behaviours so that would likely be a situation where a generic SS might say they can’t meet need. Likewise if a dc is not attending school on an ongoing basis, despite the school making best endeavours to reintegrate them. Just a couple of scenarios.

Good to hear that ds is making progress with the communication, especially with more info about what’s going on at school.

Ds still up early, we’re back to 3-something, 3:30 today with him kicking off about various things (because he’s tired and cranky). Think I’m going to have to speak to the GP again.

We went to the cinema yesterday. The film was ok, not their best.

Yes, I see Open. Do you know the point about whether a school has to say they can’t meet need to move to EOTAS?

ha, looked at that film and was considering it… that said at the mo it’s that or Spider-Man so not sure what wins 🙄🙄.

Yes that is early, def worth pursuing further sleep meds imo unless you are Margaret Thatcher who claimed she could run the country on 4 hours or whatever she said. I find it very hard to function on no sleep or little sleep, I really don’t know how you do it.

Like anything, we do it because we have to. Thankfully we get more than 4 hours, but it’s not enough when we have these worse periods.

I don’t know about the requirements for EOTAS, I guess you’d need a professional opinion of some sort putting in writing that it’s the best option.

Spider-man is quite long so we decided to wait until we could stream it.

@carriebradshawwithlessshoes my friends child is older so finished primary with school refusal etc due to.pda and massive anxiety (mainstream), he'd been masking for years they think but no one ever realised. Only just getting ehcp and diagnosis etc. He's terrified of secondary and school generally so they fought for eatos for now. Hoping he might reintegrate in a few years though as he's now struggling to access tutors etc due to his pda (they turn up but he is unable to work with them).

Oh Jabberwocky how stressful. Really hope that you get positive news tomorrow.

I called CAMHS today for an update on where DS is on the waiting list. When I called in Feb they had said 6 months. Today they said that they had no record of that call and it would 'early 2024' (which will be 3 years on waiting list). I will believe that when I see it.

My boiler has also died and the Council is still not returning my calls.

@dimples76 It took us 2 years for CAMHs, 3 years is a bit nuts that’s so long. Hope you get there in the end, they seem to still be the ‘Cinderella service’. Why are mental health and disabilities so low down on our priorities as a nation? We let vulnerable people down.

@openupmyeagereyes Glad that you could get to the cinema. DS still doesn’t seem able to sit through a whole movie, we’ve managed it in parts but I think he finds it difficult to follow language and still prefers short and snappy cartoons which repeat. Sympathies with sleep, that’s so tiring (excuse the pun) for you all!

@danni0509 it makes me feel better to know that I”m not the only one whose child reacts to other people, especially professionals who are I guess ‘intervening’ by teaching or therapies etc. I usually find they are the problem, I know DS needs ‘careful handling’ but with that, he’s usually OK and I am always there to help. What amazes me is how many ‘stick to their way’ and disregard both me and DS, which usually ends in disaster. Luckily he hasn’t had a teacher like that, but if he did, I honestly don’t know what I’d do!

@MoominMamasTribe interesting with your friends child - I am thinking I may have to fight for EOTAS in secondary, or move to another area for another SS. His current SS is primary only and the other secondary options just aren’t a good fit - they are trauma based autism SS, which seems to be more common - and DS would just take the easy path and do zero work and have no motivation. But no way could he take mainstream. I don’t really want EOTAS but I really, really don’t want him sent to the local autism SS where he can just sit in the sensory room and his maths teaching is basically a textbook.

Just on a personal note, because of the one ‘professional’ who got cross with DS at his medical consultation, it ended up rushed at the end and… bit of a long story but because it ended up rushed DS refused at home and we had to come back in today, to get everything adjusted again!

DS is now really cross and was all weekend. Grrrr… I know it’s a pain to get everything right for our kids, but that’s what being disability friendly is!

DS doesn’t really have regular appointments but they have always pushed telephone appointments which I’ve jumped at. I don’t think there’s anything I can’t cover on the phone! 🤣. We did see the London neurologist in dec, she insisted on seeing DS but reviewed him, unsmiling, throughout. She was bloody terrifying. DS was bored and fidgety which obv annoyed her (after a 2 hour wait at a northern train station then 3 hours to London then an hour in a taxi q at kX !). I said well I’m sure in your job you see worse (half laughing at the end.) she glared at me and said in a hard voice ‘oh you wouldn’t believe.’ rolled her eyes, no trace of a smile…

🙄🙄🙄. leave me to the telephone appointments please 🤣

Why would you even bother becoming a doctor if you can’t be kind to your patients?

Open I think a lot aren’t! Well I maybe wouldn’t say unkind but I would say aren’t understanding/ have no empathy/ are impatient and intolerant and abrupt. Dh always says he thought paeds would be different but not in my experience.

i actually think that despite being obviously very intelligent a lot of medics aren’t huge ‘people’ people, I say that too from knowing well our close family members who are senior drs. Personality? Pressures of working in a ‘broken’ NHS? Prob a combo of things.

carrie I realised the stupidity of my post as soon as I pressed the post button. As you say, you’d hope paed’s would be different.

Not at all open! I’ve been shocked over the years, really more so with DS!

I think that I have mostly been lucky with the doctors we have encountered. The consultants we see in Endocrinology and at the epilepsy clinic are particularly kind. Last visit to Endocrinology the doctor, medical student, room, DS and I all got soaked in water due to DS's antics but she just laughed. That said when DS had his first surgery the surgeon who came to see me (when DS had yet to return to the ward and last I saw of him was going under GA) could have really worked on his bedside manner. I was pacing around anxiously waiting for news. He just said 'are you DS's Mum?' Yes well it looks like he will be infertile and require at least 3 more surgeries. Try not to worry too much about what you did when you were pregnant with him'. Me: Is DS okay now? Him: oh yes perfectly fine.

They had a round up of lost property at school today and DS came home with amongst other things a packed lunch box from about 2 months ago complete with mouldy leftovers and a week old bag of wet swimming things. Lovely!

Well that was incredibly insensitive dimples, it’s like they don’t read the bloody notes.

I have a friend who had issues with one of the umbilical arteries in her second pregnancy and her ds was born very small. At most of his appointments afterwards she was asked if she smoked during the pregnancy (she didn’t) and she’s a doctor herself.

@dimples76 bloody hell that was ‘direct’! I’m not sure that I have words… 😦 On another note - you would think they’d notice mouldy food in lost property? Or is that asking too much. 😆
@openupmyeagereyes I guess appointments can be more revealing about other people than ourselves often. I was told that I had ‘over attachment’ issues with DS by a consultant psychiatrist because I didn’t want to leave DS on his own for 1 hour (age 7) in a public waiting room who is a flight risk - while they wanted to ‘be nosey’ / ‘talk with me about his background’, for some odd reason. Just phone me next time! And maybe consider safeguarding training? 🙄
Excuse the emojis… it’s late and DS is still not asleep.
@carriebradshawwithlessshoes I know, I don’t really mind if medics don’t always have people skills, as long as you know they generally are coming from a good place, and are clear about things. I don’t know again if this is just me but I sometimes seem to have a run of either medics or therapists, lately some SLTs who just get the hump either with DS or me.

Often it’s because of similar things like keeping us waiting, and then when we do get seen having way too long questions to me or DS. It’s all a model of ‘you fit in with us’ and well that’s not how DS likes to roll! And then, because I’m that ‘annoying parent’ and I read way too many things, and haven’t got time to waste, I do increasingly just cut to the chase myself! Which doesn’t go down too well. The last SLT told me DS’s continued language struggles were ‘because he’s autistic and how he likes to be’ and basically said that I was looking for problems and not respecting DSs authentic self. Omg… 🙄and so basically didn’t refer him for any therapy.

Pimms hope you got some sleep in the end.

good luck everyone, may the force be with you!

The Tilt parenting podcast had an interesting episode this week about low demand parenting if anyone is interested. The guest was the author of this book:
https://www.amazon.co.uk/gp/aw/d/183997768X/ref=tmm_pap_swatch_0?ie=UTF8&qid=1689772547&sr=8-1