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

Our boys sound v similar in this regard - DS can calmly talk it all through afterwards but it makes zero difference to how he will behave in the future. For example DS has a beloved soft toy pelican which he often hits DD and me with. He knows (or perhaps he doesn't really) that if he hits us with the toy that I will remove it from him. However, pretty much every day he will hit us with Pelly and he then can't have it on the walk to school.

They sound twins dimples 🤣

We go through the same shit different day too, calmly talk it through, he answers everything, he definitely understands or he wouldn’t answer like he does, he’s regularly reminded, we always talk about how we behave and how we don’t,

Next day or even same day, he’ll sometimes same hour, square 1 ! And around we go.

Ds is not exactly the same but when he gets very upset and feels wronged he will talk about getting ‘revenge’ and the various methods he will employ. That alone worries me for when he is older. I don’t think it’s a result of anything we’ve done, it’s just his own personality.

I’m rather annoyed. I’m supposed to be going on the NVR course tomorrow evening and the therapist organising it called me today. Because dh and I can’t both go they are now going to have to organise something else for us. Apparently it’s not as effective if both parents aren’t attending. I met with her in May and told her then we wouldn’t both be able to attend when she said this. Even if we did have some childcare 2hrs 45mins for 11 weeks is a massive commitment. I asked her what could possibly be said that I wouldn’t be able to communicate back to dh afterwards but she maintained that it’s more like therapy than a parenting course.

From a few things she’s said to me, I think their starting assumption is that you’re the traditional ‘we must control our child’ type of parent and they plan to show you the light.

It seems like they may now offer us family therapy (for dh and I, nothing for ds yet!) individually. Maybe that will be better anyway.

That is frustrating Open - I doubt many parents could make such a big time commitment

@openupmyeagereyes that is a huge time commitment. @danni0509 it's so hard isn't it. @carriebradshawwithlessshoes hope the house renovations are going OK.
DS has been ill but went back in today. Tricky afternoon with transitions and demand avoidance. Parents eve tonight, they said they were frustrated with him because he is so clever but his demand avoidance means its so hard to teach him, like he puts barriers in his own way. I mean, yes I agree, but he doesn't do that purposefully. It's his brain isn't it, at the end of the day, and he requires a more creative approach where he thinks the learning is his idea. I mean they do do that, and make learning into challenges etc so he does them but her use of th3 word frustrating really triggered me tbh, because to me it assumes a self awareness that I don't think DS possesses.
The shop I wanted to buy went to auction today too, so I'm quite grumpy about not being able to afford that! Still, lovely kitteh has just come for a snuggle cuddle to cheer me up, and I wrote two poems today for a competition.

The cat himself.

Ah, super cute Elizabeth.

I didn’t mean it was too big a commitment for us as parents, obviously if it helped it would be worth it. Just that I thought it would be hard to secure childcare every week for 11 weeks. Especially as it runs to mid-December. That’s if we had any, which we don’t.

Thanks @openupmyeagereyes I don't know why its saying sensitive media though! That's how I read your time commitment comments and how I meant the response too, we would struggle for that much regular childcare.

Yes, that's what I meant too - even though my family is v supportive that would be a stretch and a difficult time too.

Super cute cat Elizabeth. I would not appreciate the use of the word frustrated either. Sorry about the shop.

I received a reply to my formal complaint from the Council and have written back saying that I am still not satisfied. There were a number of factual and legal errors which I highlighted. I concluded that DS is currently in a school who have advised the LA that they cannot meet his needs and the LA have now withdrawn vital therapy and so I urged them to reconsider...Not holding my breath

I hope you can find a solution for the course open it is more than a bit of an ask for 11 weeks isn’t it.

My dh doesn’t and never has attended anything. Sometimes because of work commitments, but sometimes because he’s, well.. male 🤣 he’s never been to an ehcp review for instance. Like you say, anything said you relay back to them anyway. I always attend everything and pass any relevant info on to him. I imagine a lot of households work like that. He does sometimes, when able, come to ds appointments with me but that’s more to help me wrangle our child.

Elizabeth good luck with your poems.

Dimples I’m sorry you’re still having agg with the council. They have it in black and white they cannot meet your ds needs, but still expect them to anyway. Sickening isn’t it what they do to the children / families.

Keep grinding. You’ll have the last word with the Bastards!

carrie good luck with the house renovations, how’s ds getting on at school?

Hi all been reading but had Covid and was pretty sick so everything fell a bit behind

@openupmyeagereyes indeed hope you find a solution . Yes @danni0509 think you’re right about lots of DHs being like that, I think the reason mine ends up doing more than norm is bc it’s his native country. But I do prefer it now it’s worked out that way I guess. Does it bother you to cover it all?

how much longer do the works go @carriebradshawwithlessshoes ?

not a lot new here, feel like DD is more unpredictable than ever atm and school say the same , they think she’s testing boundaries , I don’t know but I guess they have more experience of watching kids than me. She’s doing a lot of shrieking, I thought of you @carriebradshawwithlessshoes …

hope everyone has a good weekend.

Thanks Danni

Sorry that you have been ill, Ahna

Some good news today. Firstly I received a back dated payment of adoption allowance and details of my appointment for the financial assessment (which is back to the normal procedure). And the application for funding to the Adoption Support Fund was successful so DS will be getting some OT this Autumn. Unfortunately not at school, it will be me taking him and it's 30 mins drive away.

Freshers week this week has really taken it out of me. I think it's the 'performing' especially with so many worries going around my head

Ahna so sorry you’ve been poorly. I hope you’re feeling better.

dimples great news re. back payment and that ds is getting some OT, even if it’s frustrating that it’s not at school.

Dh attends AR meetings, others appts and parents’ evening etc. but he’s not attended a course, I usually do that sort of thing. He’s already grouching about having to take the time out of work every week - he says he isn’t but it feels like that to me. Need to wait and see what they’re offering and for how long. I think he’s not convinced it will be effective but they can’t guarantee it will be, can they.

How is everyone? We had a rubbish night over the weekend with ds up for 5 hours, though he did eventually go back to sleep for a few hours. He had a couple of days off sick last week and this morning at school was a disaster, I just ended up taking him home. It’s one step forward, one step back at the moment.

@openupmyeagereyes DS had a sick day last week and routine was hard to get back into for a few days after.
We are OK. DH back after weekend away so is playing with DS racing cards while I chill out a little bit after work. Back to normal tomorrow though with DH working full time. Had a kids party at the weekend which went well and was nice for DS to be included. I'm looking forward to half term now though. Got some plans coming together including swimming and a halloween disco , but I have the busiest 2 weeks of the year coming up at work to get through first! Got an interview for the job I went for, but term time contracts are apparently not even something they'd consider, so I've withdrawn from the process. I'm a bit sad but fair enough on their part and my job is actually great when I think about it as part of a big picture. I have also rather bravely (or stupidly) submitted some poems to the National Poetry Competition so we will see!

Wow, good for you with the poetry ElizabethBennett'sBoots

Sorry about the illness and subsequent school problems Open.

I feel like we're on a rollercoaster. On Saturday we went to a Forest Adventure at a nearby farm. We had a great time playing (zip wires, toboggan run, slides, swings etc). DS was being kind to DD - helping her over obstacles etc and seemed v well regulated. When we came out of the forest DC both asked for food - it has a lovely cafe and shop. I agreed but told them to come in with me to wash their hands and then wait with me. Whilst I was queuing DS ran out - it has a sandpit , bales and toys outside. I was about to be served so I stupidly thought it would be okay for a minute. A moment later someone we had seen in the forest marched up to me to tell me that my son was dragging a hen around by its feet and kicking sand at it (the hens are free range and just wander everywhere) - she said 'it's just so horrible'. DS came in just behind her - couldn't have cared less. We carried the food out and saw a family we know from school who had just arrived. DS switched on to charm offensive mode and the mum of that family said to me that I must be very proud of him.

Had a call from the OT's administrator - DS won't have the assessment until November so therapy won't start til December at the earliest.

Elizabeth good luck with your busy few weeks. I hope your poems do well.

dimples forest adventure sounds unsettling. I hope you had a good day overall. What a shame the OT is going to be a while.

Ds had a better day today, thank goodness. Not perfect, but better.

It was the dreaded fire drill yesterday. DS's 1:1 said that he was great but boy did I pay for it. His behaviour after school was just awful, eg trying to push me onto the road and shoving DD over. Fortunately, once at home he started to come down a bit but then DD seemed to have picked up the batton. She decided she didn't like her tea and threw it on the floor. Hopefully today will be better ....

dimples I hope today has gone better. Do they warn ds and let him wear ear defenders etc?

carrie I hope renovations are going ok.

danni I hope school aren’t on your back too much. I can’t remember if they adjusted ds’ medication?

liv long time no hear! I hope all’s well.

Ahna I hope you’re getting some sleep.

Jaberwocky how is school going?

<waves to everyone else>

Things are ok here. Ds keeps watching YouTube videos signed out of his account. There’s no way to stop this other than sit with him for all his screen time, which he hates for that very reason.

Sleeping has been better the last few days, up at 5/5:30ish. Long May it last. I’ve been trialing him with 3 x 1mg of the Slenyto (sp) tablets just to see, incase the brand works better. So far so good but too early to say if it’s just coincidence <clutches straws>

@dimples76 DS' school had a fire drill before the summer holidays...he is still scared of fire every night when he goes to bed despite lots of talking about fire risk, checking smoke alarms, getting a fire extinguisher etc. I know they have to do the drills, but it properly freaked him out.
@openupmyeagereyes I hope you carry on with the later starts.
DS has discovered ninja kids on the games section of the TV...what is it with kids and youtubers!! It's also National Poetry Day today hooray! I love poetry, how it can be so powerful yet so paired back compared to other types of writing.

Bless your ds Elizabeth.

I love poetry too. Will endeavour to read some later.