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

That’s great Open. I wonder if there is an optimum time to do tests such as those? Though I assume a Dc would need to be verbal.

@PimmsandCucumbers thank you for that, it sounds like he has done so well though! And has a lot of potential. It sounds like you have done great with him though!

carrie it’s used for ages 6-16. Some of the tests are taken verbally but there may be workarounds for nv dc, I don’t really know.

Something I’ve been thinking about a lot recently, curious to know your situations. Do you think/ find your DC is different, in terms of behaviour, when you are there or absent? Even if it’s just say your DH (alone with them), or Dimples, your mum, say? School?

We seem to have a lot of time where I’m with DS and things are generally calm and fine. Then I may persuade DH to take him and all hell seemingly breaks loose (as in silly behaviour, messing around, won’t walk, throws himself on the floor and thinks it’s funny etc.) I poll up and he’s back to being angelic. He can be a devil with my parents but stops as soon as I come in. DD who has been there throughout often says it’s like a flick has been switched in terms of his behaviour when I walk in.

it means people are reluctant to take him without me there which I find really draining (even DH, especially DH!). Wondered if anyone else saw this and why?

DD has finally got her autism diagnosis. Not sure how I feel about it, at this point it'd've been more of a surprise if she hadn't.
@carriebradshawwithlessshoes I find the opposite, she masks for other people (even DH to an extent) and lets it all out when I'm there.

Jules at least it’s done, that must be a relief. Now you can move forward.

carrie ds is broadly similar everywhere. He’s not significantly different with me vs dh either, thankfully. So I went out for a couple of hours yesterday and dh did the bedtime routine. It was fine.

@Jules912 that’s a step. Was the report helpful / accurate in terms of what you see?

and @carriebradshawwithlessshoes the same as jules - DD is more difficult for me / when I’m there.

I do wonder if it’s just because I’m more firm with him. He does get into big trouble with me whereas DH just flaps around and my parents def go into flapping panicking mode! He thinks it’s funny to get that reaction from them.

DS is generally calmer with me and more regulated because I knowh his triggers and early signs of disregulation more than most. He's generally fine with DH as long as DH approaches him in the right way. Being strict with my DS has the opposite effect!!
Now that school know him better, they're getting better at helping him regulate too (and avoiding words that set his behaviour off!)

DS is horrific for DH at times, but I think it’s a combination of DS and DH still being in a frame of mind where on some level expects the same behaviour and understanding as before. Things like walking to the shop often end in tantrums and tears. I’d say DS’s behaviour is a hundred times better when I’m there. I get what you mean, it’s draining feeling you must always be there as the almost default parent as you don’t want DC or DH in a tense and challenging situation if it can be avoided.

Had a really good few days - realised now that DS’s (final and only school remaining) assessment is tomorrow. His 1-1 and the SENCO are going to try to push for an answer about having him in September there and then but I’m not holding my breath. Feeling incredibly anxious about it all again. We can’t even go to a sodding tribunal until they actually complete the draft review and name a school. It’s like the LA’s version of cock blocking 🤨

@Jules912 I think it’s tricky to process even if you’re expecting it, hope you’re doing okay. How’s your DD feeling about it?

DS has his first paeds review in bloody ages on the 1st - school have completed an autism assessment form, but I want to ask them if that’s right… or if they’re attributing the drastic regression and presentation to brain damage. But I guess they aren’t mutually exclusive.

That's good to have that sorted Jules.

Interestingly I just collected DS from my sister, she mentioned that when he got out of the pool he was v cold and started to panic but managed to control himself. She said that she thought if I had been there he would have totally lost it. So not sure what to make of that. I definitely get the best and the worst of DS though. DS presents v differently at school than home. He is also a bit of a Jekyll and Hyde character- one minute on the school run he can be threatening to kill me and the next big smiles 'Hi, Lucy's Mum, good to see you' etc. So very charming to strangers, acquaintances and friends.

My DD is much more relaxed around me and therefore her behaviour is generally very positive. With DH and inlaws, she isn't as relaxed and they often miss the initial signs of her becoming upset so they tend to get more issues. I will say that since realising that he is the problem in this respect, DH is stepping up much more and she is getting better with him.

The inlaws on the other hand just think it's because I coddle her and don't believe that autism exists so haven't seen her since that revelation!

Hi. Sorry not been on, full on with ds!!

Been too busy thinking of the quickest way to disappear in time for the summer holidays next week. 😭🤣 I’m only joking of course but in my thoughts it’s a nice escape.

In all honesty, I need a break from ds school, and ds taxi. The constant complaints and constant mismanagement of ds making our lives harder at home,

I’m not looking forwards to no respite, and ds 24/7, but looking forwards to hopefully unpicking some of his behaviours and lessening his anxiety as much as we can. I have a few nice days out planned, I’m sure they won’t go to plan and I’ll be in the nut house by the first week of September but we shall see.

He leaves my house at 8.15am every morning, clean, happy, and in a relatively good mood, he comes home, half his clothes missing, scratches bite marks spitting swearing and in the most vile of moods, he’s come home tonight he’s bit chunks out of his arm the whole way home in the taxi, he’s made his arm bleed and wiped blood all over the taxi, missing a peidro boot that he’s removed and chucked and lost. (£200 prescribed boots that orthotics are going to freak about) His wallet missing out of his bag with his tuck shop money in, and all his spare uniform missing, and telling me he’s going to kill all his teachers. The taxi are on their last nerve with him also.

Yet he leaves my house every morning ok.

He has 7 weeks off, breaks up next Friday, doesn’t go back until 7th September. So I’ve got a fair chunk of time to work with.

I took him to his CAMHS appointment 2 weeks ago, we agreed not to take ds off his medication, he also cannot have any more as he’s on maximum dose for both adhd med and anxiety med. He has another review end of September. His adhd nurse asked about his school, he said maybe they aren’t meeting his needs, I agree to a degree, and also explained they are struggling managing his behaviour, it’s not like they don’t tell me daily, and he mentioned ds might not suit schooling, I probably agree, but couldn’t commit, sorry if that’s selfish, I genuinely couldn’t homeschool ds, not for now. Maybe something to ponder on for the future but for now absolutely not.

So difficult isn’t it.

We're still waiting for the full report so can't comment on that, but the dr feels the main focus is to try and lessen her anxiety. We haven't actually told her yet, but I want to soon as I don't want her to find out from someone else.
He recommended she stays in mainstream ( mostly because she's too academic for any of the alternatives) but with a lot more support than she's getting now.

@danni0509 that sounds so upsetting, hoping that over the summer there will be an opportunity to not have school. Yet that shouldn’t all be on your shoulders either. Is there a good professional who could help over summer? Not that we can get any to magically appear, but I found CAMHs to be limited.

@carriebradshawwithlessshoes yes I have definitely seen such big differences with DS and other people. With one SLT he goes into ultra hyper mode as soon as he sees her, very extreme, shrieking and running around. With his sibling he does a lot of physical play, very relaxed, never cross. At school he doesn’t talk to anyone, and started hitting himself/things. With me he is very talkative, calm.

Gosh a lot of what you say there @PimmsandCucumbers resonates, esp re the sibling and SALT and school. It’s mad isn’t it. I do think that for some of our DC school just doesn’t bring out the best in them. Do I mean current or any school? I don’t know. It’s still a specific environment isn’t it, away from home, away from us. I still remember when DS was in mainstream and they were complaining about his presentation and I just said look, I’ll come in and work with him. Thereafter followed a hilarious hour of me and him working in quite complex stuff in the hall whilst the teacher was piling in all members of staff to ‘watch’ absolutely flabbergasted. His teacher said it was like watching a different child.

@danni0509 i think you have hit the nail on the head re breaking the cycle with home now for a few weeks. I think you should keep a diary unless you already do of what he’s doing/ who he is seeing and presentation. It could be useful later for various purposes, useful for you anyway to see. Time just merges, it’s hard to remember things sometimes. If he was on a proper EOTAS package it wouldn’t be all down to you, just learning in a non school environment and sometimes away from home. It may be worth considering to do it properly.

@Jaberwockky im not sure how to say this so sorry if I’ve not phrased it properly! Your situation is obv very different from ours, have the drs (who presumably have done mri’s) confirmed that DS has brain injury and whether there can be rehabilitation for that? I’m no expert would would hope that a specific brain injury may be more receptive to targeted therapy/ rehabilitation than where a child has a particular presentation but for no identifiable reason. In the same way a person who has a stroke may have to learn to walk and talk again and it may take a very long time but if targeted with the right intervention may be doable. Have the drs said anything helpful re that? I would have thought that’s the focus rather than just an asd diagnosis which doesn’t seem quite right (but what do I know)!

@Dotdotdot19 i laughed at DH is the problem. Yeah, here too. Very often in fact 🤣. Inlaws def need some training 🤣.

@dimples76 aw, sorry, I know it wasn’t meant to be funny but I laughed at DS charm one minute then saying stuff to you. He obviously does have some social understanding/ skills though, to be able to do that externally with people.

@danni0509 sounds like they can't keep him regulated at school at all. Maybe he's had enough now with the demands and is ready for a break? If you decide setting can't meet need, I do know someone irl who got an EOTAS package once they'd proved that no school could meet needs within a set distance. The key thing they said was don't deregister from school because then the LA assume you're happy to home ed and do it all yourself, which often doesn't work as it's too much for parents and then kids become too reliant on us.
I am enjoying a bit of pottering time. DS is in a trip today so will see how that went later. He is ready for a break now I think. Sports day went well, although highlighted DS' hugely competitive side! I've sorted everything for DS' birthday so that's all done phew!

danni sounds like he does need a break, albeit you won’t get one. What sort of behaviours are you hoping to unpick over the holidays?

Have school told you what they think the issue is at school? Is it the other kids? The demands of being asked to do work? The noise? Etc. it seems like that would be good information to know in order to inform any decisions you might make. Re. The taxi, is he ok on the journey to school given he’s calm when he gets in?

We have 7 weeks off too as school has a couple of inset days.

dimples do you think that ds is masking with other people?

Moomin I hope you enjoyed your days off.

We went bowling instead of the cinema last weekend as I didn’t book early enough. Ds enjoys it but we let him win and he went on some arcade games afterwards. We’re booked for the cinema this Sunday. Ds breaks up on Wednesday.

What are you going to see at the cinema Open?

There is some masking from DS but I would say that when DS switches from describing the ways in which he is going to kill me to sweetness and light to strangers/acquaintances he is not really dysregulated. If his will is crossed or something occurs which he blames me or DD for (the most common example being when he trips) then I think he feels that his anger towards me is justified but he is not raging at the world. It seems possibly like disorganised/disordered thinking? I am not really sure - other than it's exhausting!

We actually had a lovely time yesterday after nursery/school. Got the kids a McDonalds which we took down by a small river where the kids had a paddle. Monday after school worked well too as we went to the park which was deserted as it was drizzling.

I have been trying to call CAMHS for the last couple of days to find out when DS will be assessed. At the start of Feb they had said 6 months time but as I haven't had an appointment letter I don't think that is happening ..Now they're not even answering the phone. The EHCP case worker is still ignoring me too. However, I did speak to the Post Adoption Social Worker and she is putting in another application to the Adoption Support Fund for OT

Jabberwocky how are things with you?

dimples we’re going to see Elemental.

Sounds like you’re having to do a lot of chasing at the moment, that must be exhausting in itself. I hope you can get some answers soon.

@dimples76 it sounds like he’s almost ‘got used’ to saying really scary horrible things to you, to threatening you. I have no experience of this so I’m sorry I haven’t got direct advice. When you tell him that’s not a nice thing to say, what is his response? What is your instinct on this? Is he doing it to gain power? To shock? Does it do it to anyone else? I wonder if a really expert psychologist could help, it’s almost like he’s exhibiting sociopathic or the like behaviour. Might need some assessment or unpicking from a professional.

@carriebradshawwithlessshoes sounds like you are in tune with your child and it’s amazing how this isn’t valued enough - people really have to have the time to get to know our children don’t you think? There’s no shortcut to it. I feel like the ‘each child is individual’ and we ‘tailor support’ is said far, far more than it is really acted on. DS is in quite a small class of 6, but new teacher’s every year, who have been great in that they are open to learning about him. Yet every single year I find myself explaining, going through, saying ‘this is why he does this… please react to him like this…’.

@danni0509 I also find that the teachers and staff often just think that ‘behaviour’ is just part of a diagnosis - but it’s not. It’s not ‘autistic’ to be aggressive, it’s often harder to cope but then that’s up to the staff to help that. Sometimes I worry about DS also as we are coming up to secondary, he’s in a tiny class and STILL is not well understood, and they ignore small incidents of aggression with my DS eg hitting the table - and then ‘surprised’ when he escalates (please do something as soon as he exhibits distress) - I worry what on earth is going to happen later on in education. He needs consistent support to nip this in the bud for him, usually by understanding him better.

Went to a medical appointment with DS today, the main guy was fine as he gets DS is very, very anxious being examined in any way. But another staff member just didn’t get him, and DS answered her a bit sharply as she was asking him a lot of questions whilst being examined. Which was just too much for DS. And the staff got a bit cross with DS back! How do people not see just how difficult it is for kids with disabilities. I had to tell her that DS was very anxious and he needed less talking from her - I’ve got more feisty as I just don’t have time to have DS upset from medics / staff - one bad appointment and he could well refused to ever go again. And she did but then she sat in the room throughout the next 30 minutes still looking a bit uncomfortable and cross! Deary me, there needs to be good disability training for so many areas. Or maybe it’s just personalities, some people just can’t be responsive it seems to others and so just can’t ‘cope’ with kids who needs an unintuitive approach.

@openupmyeagereyes the behaviours I’m hoping to unpick during the 7 weeks off, are him acting like his class friends, I mean no offence to any of them, but I have about six different children at the minute. I want the dla for them all. 🤣

Ie.. pretending he’s non verbal for massive chunks of the day to be the same as x (wouldn’t mind so much if he was pissing quite, but he makes all the noises they do instead, he properly mimics. He’d be a good flaming actor) He literally won’t speak, he just uses their noises on loop and they really internally stress me out, the noises wouldn’t be so bad if they were his own, he does make his own noises which is fine, he always has, but knock it on the head with half the schools aswell, he’s also doing this at school, and by what his teacher says, it’s annoying them too.

or he is constantly pinching to be like x, or spitting like x. Taking his clothes off like x. wants to do everything the others do, often mimicking them all at the same time 😂

I genuinely mean nothing bad when I say this, but the class he’s in are all much lower functioning compared to ds, so he acts more severe, cognitively, if you understand what I’m trying kindly to say?

Yet say on a weekend, he’s still naughty etc, still has autism, still has adhd and everything else, but acts more ‘himself’

Plus when he’s acting like his class, he does all his own stuff on top. And I was sick of all that years ago 🤣 so I’m just really drained with it all.

That will all lessen during the holidays, but restart in September, but just a break from it now ifyswim.

@PimmsandCucumbers I’ve had similar at medical appointments, the orthotic dr he sees, the man’s ok, the woman’s a witch, she gets similarly shitty, when ds has kicked into her when she’s ragging his feet about, I’ve had to be a bit assertive with her before now. I ended up once taking the foot measure thing off her and doing it myself. They need more awareness and training.

His autism consultant, the main one, the head of them all, is the worst. Ds pulled the wire out of the blood pressure monitor when I was talking to her, he just grabbed it and pulled on it, she used a really aggressive tone and said ‘put that down right now, very expensive machine, not to be played with, it isn’t a toy’ etc, her tone was really not nice, I was thinking Jesus, neuro disability consultant not understanding neuro disabilities?? I must say I was off with her after that because she actually pissed me off.

His special needs dentist too, she’s been shitty with us at an appointment aswell, ds was doing something he shouldn’t, turns out she’s best friends with his head teacher (he went with his uniform on) I thought hmm you have the same attitudes it seems..

I mean I know ds is the ultimate problem, but a little understanding is all that is needed isn’t it.

Dimples honestly I’m pleased to see your ds describes the ways he’s going to kill you too, as I thought it was just ds, he says some awful things. I’m not pleased your ds says it of course, but pleased its not just my ds. His teacher always seems really concerned when she mentions these sort of things, I did wonder by her reaction if it was just ds, but seems not.

It’s thunder and lightning here, absolutely pissing it down, we got out for a couple of hours this morning. I’ve got 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.