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Thread 12. Autism and any other additional needs.

1000 replies

danni0509 · 29/05/2023 19:31

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

OP posts:
openupmyeagereyes · 11/09/2023 19:19

Listening to the owls!

carriebradshawwithlessshoes · 11/09/2023 20:30

🤣🤣 Open! I considered logging on for the day..!

dimples76 · 13/09/2023 18:44

How's everyone getting on?

Bit of a stressful week - not actually caused by DS. Although I can't even really enjoy this easier behaviour because it feels like the calm before the storm.

Work has been pretty awful, lots of conflicts and a rather demoralising talk about career progression where the mantra ' you need to be doing more than the day job' was repeated ad nauseum - erm how? A v rude student complaint who advised me that he had reviewed the work he submitted again and had determined that it was pass standard so I should take another look!

But worst of all I was checking my finances last night and realised I hadn't received my adoption allowance yesterday and a 1/3 of what I normal receive last week. I sent an email complaint last night querying what was happening as I hadn't heard anything since it was renewed in March. Email back please can I confirm that I received the letter they sent in July stating allowance would cease in September- clearly not! And any way why would it end? I was promised when I adopted DS that I would get AA until he turns 18 due to his high level of needs (which they recognised then were incompatible with full time work). Between the EHCP and post adoption team I am absolutely furious with the council.

Although my children are generally sleeping well I keep waking up throughout the night due to my worries. I am thinking of trying to get a GP appointment. I am also wondering if I am peri-menopausal.

We did have a lovely tea time today though singing the sea shanties DS has been learning at school.

openupmyeagereyes · 13/09/2023 19:02

How stressful dimples, do you have their agreement in writing? I hope you can get it resolved quickly.

Things have been going pretty well schoolwise here, though ds kicked off this morning before we left and continued to be a bit heightened when we got to school. I think I’m a bit hormonal as I’ve been metaphorically licking my wounds this afternoon after he was so horrid to me. I’m sure I’ll have cheered up tomorrow. Can’t wait until he’s in bed tbh.

I finished Schitt’s Creek. Absolutely loved it. I think Moira was my favourite, she always had a great turn of phrase - ‘my leg is in slumber’ Grin Looking forward to The Morning Show, Sex Education and possibly something else that I can’t remember, but I did start watching Welcome to Wrexham which is quite good so far.

Ahna65 · 13/09/2023 19:02

Ah @dimples76 that sounds like a crap week. Work stress can be so de-energising and that’s terrible about the allowance - as you say why would it stop, but you shouldn’t have to chase for it!

going to the gp can’t hurt I think. See what they have to say. You have so much on your shoulders. I am also having sleep issues on top of DD - I wake up not breathing most nights and I did go to GP previously but they concluded it wasn’t physical only anxiety. But I may go back again.

i have also found this week tough so far. Huge meltdowns from DD that really trigger my own stress. And after thinking sleep was going better it’s so far not - last night 1-6am up, I mean come onnnnn… and DH and I both found it hard to keep our cool during the night with huge aggressive meltdowns. Of course we want to help her and know it’s not her fault but it’s hard to keep calm sometimes (of course I don’t mean physical but sometimes find myself shouting at her which is awful). I’m thinking there must be strategies to learn / someone I can talk to to help.

I’ve booked tomorrow off work just to rest / chill a bit. Felt a bit of an indulgence but needed.

openupmyeagereyes · 13/09/2023 19:06

Bless you Ahna that does sound rough.

I’m thinking there must be strategies to learn / someone I can talk to to help.

You’d hope wouldn’t you, given the number of people that deal with this. But I’ve not yet come across strategies or scripts to help in the moment. I live in hope.

openupmyeagereyes · 13/09/2023 19:24

Not that nighttimes are as bad for us when he’s up. I can only imagine how stressful it is for you.

Are you anticipating/dreaming about her waking up do you think? Could it be sleep apnea?

ElizabethBennetsBoots · 13/09/2023 19:32

@dimples76 how stressful. So condescending of work to say that, I mean, there's much more to life than presenteism. I tend to look back fondly on my old job (in HE) but in reality I remember being made to feel rubbish because I had other commitments. Younger colleagues or those with no caring responsibilities were always praised by central management for 'giving the job their all'...I mean, yes, because they slept well and didn't have a million other things going on! I think i reached a point where i realised it was just a job ultimately and, although I am fully present at work and am enjoying it again following some adjustments, I am quite strict at leaving on time and not replying to email after I finish (unless it's really urgent). Cheeky student too, the entitlement!
@openupmyeagereyes glad school is mostly OK.
@Ahna65 it sounds so tough. Its so hard in the moment to always stay calm, give yourself some self care as you're only human. I have found modelling calming down techniques helpful, so if I feel anger coming, I go to another room for a minute to calm down. In the moment, breathworkjng has really helped me. So before you shout, take a breath and hold it for a few seconds then breathe it out in short bursts. Do it three times. It gives your brain the space to pause and think how terrible you'll feel if you shout while your body is calming and the anger adrenaline spike fades. I have no idea how medically proven it is, and it doesn't always work, but I've found it really helps me to regulate myself and model emotional regulation for DS.
Hope everyone else is doing OK!

dimples76 · 13/09/2023 19:39

Thanks.

Ahna taking a day off sounds like an excellent plan. That sounds like a terrible night I took a couple of hours this afternoon to have a coffee with a friend and it has helped.

Open sadly I don't have it in writing but I think that it is in writing as the panel was minuted. I was thinking I might put an SAR in to see if I can get it. I'm happy with the annual means testing but why they think that it can just be removed I don't know. DS was deemed very hard to place and if I hadn't agreed to adopt him he was going to go into long term foster care - which would have been so much more expensive for the LA than providing some financial support for me.

ElizabethBennetsBoots · 13/09/2023 19:54

Sorry @dimples76 I was trying to be supportive and sorry if it came across wrongly!

openupmyeagereyes · 13/09/2023 19:57

I have a friend who works in HE and she says that nobody works pt. She does and is looked down on for it. Ridiculous.

ElizabethBennetsBoots · 13/09/2023 19:58

@openupmyeagereyes I would echo that experience!

openupmyeagereyes · 13/09/2023 20:01

It’s misogynistic too because more women work pt.

dimples76 · 13/09/2023 20:17

ElizabethBennett'sBoots you did sound supportive. Not surprised about your friend Open. The worst of it yesterday was that the meeting was led by two women professors and it was an event for women in my faculty (which is v male dominated) and yet there was so little recognition of part time working, eg 'everyone should be doing x, y and z' at least once a year - well surely for me it should be every 18 months. Tomorrow I am going to focus on my thesis and turn off Teams and emails. I'm sure that anything can wait til Friday.

ElizabethBennetsBoots · 13/09/2023 20:55

Phew @dimples76 😀

danni0509 · 15/09/2023 09:52

Dimples sorry your adoption allowance was stopped, are you going to get it reinstated? How ridiculous. How can they cease it if they told you until ds was 18. One thing after another isn’t it. Like they pay you enough anyway with the measly amount they give! I always think about carers allowance, the weekly amount, should actually be the hourly amount to look after my ds and even then it wouldn’t be enough. 🤣

Hope everyone else is ok?

New taxi and PA are really winding me up. PA came back 5 days ago and has done nothing but complain about ds in the taxi, every single day they have had something negative to say, and the taxi driver keeps threatening ds. Yesterday he threatened to go driving around to find ds grandads house and tell him about ds swearing to get his pocket money stopped. He got the sat nav map up on the car screen and told ds this is where your grandad lives and this is where I’m driving too right now. Ds said in response ‘drive to my fucking grandads house then I dare you’ which wound the taxi driver up more.

What part of ‘this isn’t how you manage ds’ do they not understand, I’ve told them time and time again, and at this point I’m convinced they should actually be going to school with ds. I couldn’t make what I’m saying any simpler for them.

If ds swears 1000 times you ignore him 1000 times, and so on.

How is ds swearing physically affecting them anyway? Just ignore it.

He’s been spitting too, the PA told ds if his spitting continues her and the driver are refusing to transport him anymore and he’ll no longer be able to go to school etc etc, why would you say to a 9 year old you can’t go to school anymore etc? Spitting is a behaviour (not pleasant I know) that comes with ds disabilities (long term issue) but threats all the time aren’t the way to solve it.

I may aswell fill a can of petrol up every morning hand it to his PA and say just keep pouring it over him.

Sick to death.

OP posts:
danni0509 · 15/09/2023 09:56

He’s had 14 PA’s now and 3 taxi drivers in 2 years, it’s a long term issue and they are ALL the same. Don’t understand my ds at all. They all make him so much worse.

I genuinely can’t drive 88 miles around trip x 5 days a week to take him and pick him up myself, so we are stuck with shit transport who clearly don’t have a clue on how to manage the more complicated kids.

Banging my head off a brick wall.

Hes been fine in school so far, no bad reports at all x

OP posts:
danni0509 · 15/09/2023 10:03

His school don’t help the matter, the PA spoke to his teacher and he told her to give him points for good behaviour (load of shit anyway that system, never worked at home so I abandoned it)

so Pa sits constantly reminding him about his points and taking away his points etc etc, riling him up, and as anyone is aware of PDA that’s also not the way to go about it.

I said stop the points, she said BUT his teacher told me to give the points so I’ll keep it up for now, so I said I don’t remember (teacher) giving birth to ds ? (Same teacher who was winding ds up at the school fair with the raffle game if you remember, wouldn’t listen to a word he said if you paid me too)

I literally do this job day and night and have done for almost a decade, why does no one listen to what I’m saying ?

OP posts:
danni0509 · 15/09/2023 10:10

He takes his poppits in the car, he’s got a giant one, he threw it in the car so they banned it, he was kicking the seat so they don’t let him wear the shoes in the car (his prescribed shoes) he was taking his teddy and he was tapping it against the window (it has a plastic nose, he likes the tappy sound) so they banned his teddy, his iPad he had it too loud (doesn’t like to wear his headphones and of course if he’s told to turn it down, he turns it up) so they said no iPad anymore.

I mean come on, do you understand why he’s playing up? 40 mins there n the same back just staring out of a window.

Get the fuck off his back.

OP posts:
Ahna65 · 15/09/2023 10:15

Oh @danni0509 how crap, the fact they are using threats and yes just not listening to you as the expert.. no advice really but it sounds so frustrating. Sometimes I have found with super difficult people (not necessarily in relation to DCs but in life!) they respond well to being flattered a bit / being overly nice through your teeth. Probably you can’t be arsed with that by now tho! Or sometimes I have found that people in our care system have improved when they seem to feel genuinely sorry for us - eg opening up a bit how hard it is. Although these people sound like they’ve just made their mind up day 1 and that’s so crap.

glad that school itself going ok so far.

Ahna65 · 15/09/2023 10:18

We had a catch up (6month type thing) at DD school. Some of her goals have been deleted bc she just shows no signs of meeting them. Small things eg putting her bag and shoes in the right place herself - it’s not so much the goals but it’s a bit depressing that they get deleted. Also, depressingly, they agree with us that she has no real understanding of language (receptive communication, in English, I think) - of course none of us are sure but that’s what we think.

she has improved on things like sitting at the table for their prescribed activities, knowing the structure of the day, seeking affection to calm herself rather than full meltdown. And pointing at pictos for food / toys goes well there. so probably we need to try more and more pictos at home. I think an evening with laminator (and wine) ahead ;-)

danni0509 · 15/09/2023 10:24

ahna they know how difficult it is, they always comment like don’t know how you do it etc, all the PA’s and drivers have said the same over the years, it’s not them complaining to me about ds behaviours that’s bothering me so much, although they do need to give it a rest as it’s like a broken record every day, it’s just how they are mismanaging him. Despite me giving specific instructions.

But saying that not sure my explicit instructions would be any more instrumental in them managing him any better really, but the biggest advice is they need to just largely ignore it, then it’s not an issue if that makes sense? If they don’t make it an issue, it’s not an issue?

If you’re going to get wound up about a child swearing or kicking a seat, everything ds is doing is going to piss them off.

Tapping a teddy on a window, kicking a seat, swearing, scratching the seat, the list goes on, each and everything he does they are all over, not just these ones but the previous staff too, they expect complete obedience at all times, just doesn’t work with kids like ds.

I make it sound like he does whatever he wants whenever he wants, not at all, just pick your battles, there are FAR too many battles with ds to be at him for each and every one.

OP posts:
carriebradshawwithlessshoes · 15/09/2023 11:29

@danni0509 this is an off the wall thought but could you just for a time even a few days go with them? Either there or back? It’s hard sometimes explaining things, but just to demonstrate to them what YOU would do? Literally they would sit in silence and observe YOU. I’ve no idea where you may end up (geographically)! But when DS old school were saying ah but he does this and won’t do that my instinct was ffs just let me come in and you watch. It made me feel a lot better and made them look quite stupid.

@Ahna65 some of that review sounds good, don’t get disheartened. So how do they teach her where to put her bag on a morning? Is it far, is it in the room? Are they taking her and showing her hand over hand if needs be, paired with language? I don’t know DD of course but that constant repetition and rote learning even in the absence of language helps. So we used to say to DS ‘go and sit on the bottom step and shoes off’ when he came in. Now he just automatically sits on the bottom step of the hall stairs and takes his shoes off. The pictos may well help with language understanding too… one poster wrote on here ages ago that her DS didn’t actually associate a shoe with the word ‘shoes’, once that connection had been made via a pec and paired language he took off.

@dimples76 that all sounds a stress. With ‘progression’ do they actually expect/ want you to be voicing a desire to progress and does it matter if you don’t? We have many staff (myself included) who it is known are very good at their jobs but aren’t banging down any doors for promotion because of reasons such as young kids (usually) and that’s fine. It’s never expected that they should be, it’s a personal choice anyway and if they bring value to the firm then so what? It’s no skin off their nose, is it? It does get annoying when you see people often men rising the ranks who aren’t that good but are doing the loudest shouting about partnership etc, but once I’d got my head around that it was more about let’s all crack on, bring to the table what we can and that’s appreciated as something of value. I appreciate all jobs are different tho. Come and work with us 😉.

Had a bizarre school meet up instigated by us around the ‘DS isn’t progressing’ theme. DH told me to not kick off so I was very restrained 🤣. Anyway the upshot seemed to be that they said DS was unlike any child they had ever seen before. Actually said this. Said some abilities are almost savant like (maths, reading, memory), but although he’s getting better spends a lot of the day really disregulated. Stimming jumping, moving. Tbf he’s not like that at home really so I was a bit surprised. Anyway they seem to find this all fascinating and said the spikes in his profile were just off the scale. I’m not sure what the answer is, they said heavy OT but he’d been having this for a full year with no change. I even wondered if they were saying he should be on a home Ed programme and asked this, they said no, def not, that wasn’t what they meant. So don’t know really?! I wonder how typical this profile is really?

they said they have a lot of hyper/ stimmy kids but their academic abilities are low, and a lot of kids where their academic abilities are high but they are more regulated and will sit and listen and don’t need much OT input. DS is straddling the 2 and it’s making him apparently quite hard to place in school for learning/ peer group purposes.

ElizabethBennetsBoots · 15/09/2023 11:47

Oh @danni0509 how frustrating. My DS has pda and honestly, I can totally see if anyone tried to manage him like that with threats it would make him worse in the moment, then quite anxious and upset after as he would genuinely believe grandad would stop the money etc. Ignoring and picking battles are some of the best strategies. I gave DS' old PA a print out from the pda society website!!! Arghggg though, how frustrating.
@Ahna65 so school should be looking at how they can develop those language skills now.
@carriebradshawwithlessshoes how interesting. I would say that my DS is very similar in terms of being academically able when related and also spending a lot of the day needing lots of OT input in order to calm the movement and hyper impulses. I also know a few of his peers who are similar. How is his regulation now compared with when he started at the school? Does he respond to the OT input that they are providing, as in does it regulate him? If not, what else could they do? Rebound therapy is great for lots of movement input as are yoga balls.

dimples76 · 15/09/2023 12:12

Oh Danni the driver and PA sound like a nightmare. Why do they think that removing all the things which comfort and distract will help the situation. I have got to admit I find my own DS very annoying at times when he is making weird noises, screeching, tapping etc but I generally just take a deep breath. I can't imagine many children responding to threats like that. It is especially impressive that he seems to be doing well at school.

Ahna that must have been disheartening. My DS's school tend to adjust the unmet targets or put more scaffolding in, or leave unamended (to give more time) eg one target was to work without prompting for 2 minutes, the next year they reduced it to one minute.

Carrie, I don't know is it really unusual to have that profile? My DS doesn't as he is not academically able. Re Academia, I think there is an expectation that you should always be seeking progression. Once I complete my doctorate next year I think I will re-evaluate my career options.

I have to say this week it feels like the LA is trying to make mine and DS's life as difficult as possible. School just emailed to say that LA has said OT has to stop. Perhaps they think DS had been miraculously cured. I have just put in (another) formal complaint in re the removal of OT. I put my appeal in yesterday re the adoption allowance. I feel so angry at the moment.

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