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

Open fingers crossed the improved sleep continues.

ElizabethBennett'sBoots it's so tough with the fire drills, isn't it. He did have ear defenders and was with his 1:1.

Perhaps AIBU (but I wouldn't brave that board!) but I am really frustrated with a communication from school today. It's about 'bikeability' which the Council are doing for DS's class every day of the week before half term but DS won't be able to take part as the children have to be able to ride their bikes to a reasonable standard to participate. So it is the 2nd time this half term that DS will be excluded from an activity due to his disabilities. I have written a rather stroppy response to school asking what alternative has been put in place for children unable to access the scheme...I am feeling a bit ground down from all the fighting. Tomorrow will be 15 working days since I submitted the EHCP appeal and it still hasn't been registered.

dimples YANBU, something else should be put in place for those who can’t ride a bike yet, like lessons. It wouldn’t take much effort would it.

I still remember doing the equivalent when I was at primary school. Cycling round a figure of eight of cones. I remember doing my swimming certificates too - swimming in pj’s etc. Happy days.

Hi everyone, thanks @openupmyeagereyes but no unfortunately a bad sleep phase. Sounds like yours has been generally pretty bad too tho, sorry to hear. I actually start a new job next week which I was super excited about but I swing between that and thinking how can I manage that.. just the headspace for something new. But I was transparent from the start of interviews that I need flexibility. Will see how it goes. The content of the work is sorta my dream job but I know I was very lucky with a supportive boss in the old one. I got pretty emotional leaving actually, just bc this job (last 2 years and a bit) has been pretty much the hardest of my life and it was hard to look back I guess.

DD is having a difficult time, sleep aside. Just very challenging behaviours. Latest thing is playing w her breathing, like trying to hyperventilate or smother herself in a pillow and hold her breath. It freaks me out every time - anyone had this too..?

Hi everyone, sort of been dipping in and out

I applied for and got a job that started this week, which coincided with my ds deciding he would absolutely not go back to school! So we are at the end of week five and he's still refusing school transport and is managing up to lunchtime with me doing drop offs and pick ups. The school are being amazing but it has been a very tough few weeks. I don't know how you have managed doing the same for so long open.

Luckily my new manager is great and the work is flexible which is a relief. Hope you get the same Ahna.

So infuriating dimples, you would have thought there could be some reasonable
Adjustments for him. He's been there for long enough!

Dipping in and out here too. They've agreed to issue DD's EHCP with equivalent to 32 hours funding. I'm alternating between bouncing round the room and waiting for the other shoe to drop as it all seemed too easy. I'm also not quite buying that it doesn't actually say 32hours 1-2-1 as it's for the school to decide how to spend the funding. I was in such shock at it being agreed for full time that I forgot to ask all these questions on the call!
DD got really upset at the recent fire drill too. She had her ear defenders and they told her the day it was happening but not the exact time (as she wouldn't know for a real one) so she spent the whole day on edge expecting it until they did it mid afternoon.

Congratulations on the new jobs Ahna and Liv. That breathing thing must be hard for you to deal with Ahna. Hope that school issues improve Liv.

Great news re the EHCP Jules.

Ahna congratulations on the new job. I hope you enjoy the change. Hopefully dd stops experimenting with her breathing, must be stressful. Years ago I had a manager whose dd used to hold her breath until she passed out, she grew out of it.

liv good to hear from you. Congratulations on your new job too. Sorry ds is still having issues getting to school, does he talk much about it?

Jules great news re EHCP. Our LA refused to specify 1:1 support too. I didn’t push it further as I knew his ms school had a 1:1 for him at all times, if I hadn’t trusted the school I would have pushed to get it quantified. How much do you trust the school?

I do actually trust the school but know things can change. And I want to be careful what I wish for as she doesn't want or need a 1-2-1 glued to her side, just someone in the room to help as needed. I've got a meeting to discuss on a Friday but suspect they will refuse as the EP report is equally vague. If I go push it further is that going to delay them issuing it though.
They made it sound like the funding equivalent to 32 hours was all for the school, but I was so surprised it was so much I forgot to ask if that included the OT and SALT.

Yes, if you push to amend it will delay it. They will issue a draft, you have 15 days, I think, to accept it or not, then they issue the final document.

You shouldn’t accept it if you’re worried at all about them using the funding to benefit dd.

Having a mare of a time.

Ds taxi company have refused to take him to school anymore,

Council have said they cannot arrange alternative transport arrangements due to ds dangerous behaviour in the vehicle . They’ve had 6 serious complaints in 3 weeks of various things he’s done in the car, I’ve been on the phone all afternoon to transport manager, who has been the most useless human I’ve ever had to deal with.

He said it is my duty to transport him and if I cannot get him to school (80 mile around trip, each day, 5 days per week) they will report it to social services. 🤣 they will report ME to social services, because THEY can’t find him transport! Bring the social worker on. I think I was supposed to be scared. Come to my house, he’s so well looked after and if he belonged to most households he’d of been placed into care years ago! Do your bloody worst!

Im taking ds until half term next Friday, then he can’t go back to school as I cannot take him after that. (1 car, dh uses it for work, he has no choice as he works miles from our house, I cannot get ds to school that far every day, impossible, I have no other available solution) thanks to the council.

These are the things over the last 2 weeks the taxi driver has said to him.

His taxi driver has threatened to pull ds hair in response to ds saying he would pull his hair, he has called ds a fucking wanker (!) told him he is a little shit, told him if he was his teacher he’d of given him the cane long ago, all 100% true, not ds making any of it up.

I’ve reported all this to the council, school and taxi manager, email trails for all, the council said they would follow this up with the taxi manager. Didn’t even sound concerned when I told him he’s swearing at my disabled child or threatening to pull his hair.

Absolute shambles of a system for kids with send, they know ds has challenging behaviour they were literally the ones who did the risk assessments.

But apparently if your child is causing dangerous situation arising from behaviour and putting anybody in the vehicle at risk they have the right to withdraw transport at any time.

So yes my child is going to have no education and not be able to go to school. Lovely!

His school are making him worse too. I haven’t got time to go into it now as I’m in bed now, but I’ll report back tomorrow, heard some interesting things off ds this last couple of days. Recorded him saying some shocking things what his teachers are saying and doing. I purposely recorded him as then I have the proof.

As much as I won’t like it, and by god I won’t, I think ds being home is the best thing all around.

Completely done with it all.

Thanks open. No he hasn't said anything really just that he doesn't want to go on the bus, doesn't want to leave me. But he's been going in from 9-2 for the last couple of school days so we are getting closer to full days. He's really struggling with the classroom particularly though, spending a lot of time in the well-being room.

Jules if OT and SALT are in the plan they should state if they are direct or indirect hours. So when ds was in mainstream he had 32 hours of support plus 15hours of SALT some direct/some indirect. We never managed to get them to put OT in. The plan.

Oh dani what a nightmare! I can't believe he said those things to your ds, No matter how he was behaving there is absolutely no need to speak to a child that way.

Dani is there any chance you can use this to get him moved to a better school for him? Wasn't there a local one where they seemed like they knew what they were doing?

I’ve asked liv they said I would have to call an early annual review and discuss it all then.

But the reality is there’s nothing available. I know this as my sister is trying to get my nephew into the SN nursery and she’s been in touch with the particular school and they say they have nothing available. She’s been like a dog with a bone and they have said they are very limited with spaces. She speaks to a lady with an older child and he hasn’t been able to get a place either. So I think that’s perhaps out of the question.

Omg @danni0509 what a nightmare so sorry you’re dealing w that. The threat of social services too - so wrong. No suggestions but just really hoping for a solution for you, these people sound horrendous to deal with. Is DS aware of the situ or not as such?

@livpotter hoping that school gets easier, that must be stressful with the new job especially. Do you find school are ever to quick to send home or are you on the same page?

@openupmyeagereyes oh wow breathing til passing out.. seriously hoping we don’t get to that!! But yes like everything likely a phase, just a question of how long…

danni surely you have to call an early review anyway, given the school and taxi situation. Insist on someone from the LA being there. He’s going to need some EOTAS while all this is sorted out. It’s the LA’s job to find something suitable.

Absolutely shocking the taxi driver said those things to him. A grown man. He should be sacked.

His teacher replied back, ‘oh sorry to hear that’

I had just told her ds was being verbally abused and sworn at by the taxi driver, she had sent me an email that afternoon complaining about ds not wanting to get in the vehicle each day, and him creating on the car park and the staff having to physically get him into the taxi.

Anyway I responded with a lengthy email, told her the story, about the council saying they won’t be able to arrange transport anymore, ds won’t be able to attend school, told her I would have to take him until half term, then he can’t attend until the council sort their act out.

She has wrote back, ‘oh sorry to hear that, please can you make sure ds arrives a few minutes after 9am if you’re bringing him, to allow staff to manage the others into the building first’

Like not interested at all, only concerned ds gets there late to save them any additional bother.

My plan is, get ds to school, come home and phone send team and speak to his useless ehcp caseworker. I’m going to phone transport again.

Last night obviously ds has heard me on the phone to transport manager, dh was trying to sort ds whilst I spoke but ds kept piping up, he heard me say he won’t be able to go to school anymore, so he will have no school to attend etc,

I’ve taken his iPad to charge at bedtime and he has a drawing app, when I’ve backed it all up, the drawing app came up. I see a photo he’s drawn and it’s 3 stick people and it says ‘goodbye my friends I will miss you so much’ 🥲🥲 Honestly all this breaks my heart with him.

He was only at CAMHS 2 weeks ago.

camhs are due to ring me again in another 2 weeks. Which is when he’ll increase his sertraline.

The ‘’sertraline’’ for anxiety, that is pointless taking if the medications going to reduce his anxiety, but certain staff and situations that ADULTS keep putting him in are going to increase it.

That’s so sad danni, I’m truly sorry for everything that’s going on.

On another note though, pleased your dh is back at work. I hope he’s a lot better.

Regarding the interesting things ds has told me about school..

His teacher has been emailing me and complaining daily. Every. Single. Day. More or less since the beginning of term.

On one of the recent emails she said that ds had spent a lot of time in their calming room today and it was his choice, but he was crying in there for quite a while and couldn’t explain why. She said he’d had a really emotional day.

I asked him in my way, how I question him. And I’ve honed a really specific way to question ds as you get all the info you require this way!

Why were you crying in the calm room ds? He said because x twisted the lock and wouldn’t let me out, I said the lock? oh no teachers are using locks on doors? What does the lock look like? He said it’s a little round gold twister and it stops me escaping. (Locking him in rooms then)

I said who is in the room with you? He said nobody, I said nobody? How would they know if ds was ok? He said x and x watch me through the window on the door, they say when you’re calm you can come out.

He said he doesn’t like going to the ‘kid prison’ I asked him what it looks like, he said yellow walls and blue mats with no pictures on the wall.

I said what do you do when they take you to the calm room? he said sprint away as fast as I can. And x and x drag me and my knees scrape on the floor! He then said, in his words. ‘They use an extreme amount of force on my arms’

I got all this on video anyway. 😡😡

Thanks open dh is like my second child. He’s a problem all on his own 🤣

I said how many children use the calm room? he said just me and josh (I know josh is a handful too) I said why just you and josh? He said cos we are the ‘hitty kids’

Oh and he was crying because he kept saying X name over and over and she ignored him. And said she wasn’t listening until he’d calmed down.

I have to take him there this morning. I’m going to have to try really hard to not reverse over x and x’s heads!

This info is new to me, so I need to decide what to do with it also.

Wow @danni0509 that’s absolutely horrific with the lock…