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 school are annoying me on the scrounge, he had his summer fair recently, (his school always have something up their sleeve to raise money - literally every week they ask for cash.) I’ve started just ignoring some requests as it’s so expensive. But then they send the child home asking for money 😭

Summer, Xmas, Easter fairs, at least 3 sponsored somethings a year, sponsored race, sponsored reading event etc etc, money for bake sales, McMillan coffee mornings where the child needs £2 for a cake etc, Red Nose Day, children in need, wear red day, wear yellow day, odd sock day, mental health day, raising money for the charities that sponsor them with new equipment etc that’s what was last week they needed £5 per child for a company that help them throughout the year, world book day, these are just off the top of my head, always need a donation of some sort..

Then ds has been going to a cafe every Tuesday, this requires £5 each week.

Monday it was £5 for the fair, Tuesday £5 for the cafe, today it’s £5 sponsor money, then just had a message about non uniform Friday and they need £2 for a cake sale, £17 in one week is a joke isn’t it.

We had to go to the fair too, so fuel there n back (44 mile round trip) then we spent an additional fiver on top of ds fiver as they were selling cakes and juice that ds wanted, I don’t know if I’m just being tight but give it a rest it’s a cost of living crisis.

I don’t genuinely have £17 spare in ONE week on top of school holidays being around the corner….

danni I totally agree, that’s too much.

@carriebradshawwithlessshoes Ugh, honestly I don’t know anymore. They said there was a certain medical issue they felt they’d struggle with - but DH and I are unsure why they can’t have appropriate training or this can’t just continue in the community as it has been. To be honest we accepted this at first but are now questioning.

DS’s assessment was great, offered a placement … they have one place left (fully independent) for September, and are chasing the LA as they need a response now basically or they’ll need to offer the place to another child. No response despite my chasing and his current schools chasing the caseworker, manager, or the director of children’s services. Feeling really defeated.

We were going to reserve a plot this weekend on a new build site so we can give the kids some stability, but it looks like this won’t be a viable option if one of us can’t work due to the lack of a school place in September.

Just generally feeling really, really low that our entire future and financial stability rests in the hands of someone who quite frankly doesn’t actually give a shit.

Hope everyone is having a better week!

@danni0509 that’s beyond excessive! You’re absolutely right, the school need to rein it in. It’s like they don’t get the concept of a coat of living crisis.

I blocked the school text message demands and the PTA email demands for money go straight to my junk box.

Anyways, that wasn’t even the reason I came on. Lol.

Wanted to say, I genuinely don’t think ds is in the right school based on the school fair,

we don’t usually get invited to the fairs cos his school were covid police up until recently, we usually just send the money with the child, and it’s an event for pupils and teachers, but we got invited this time, so me and his dad went.

It was in the main hall, with all the school in the hall, ds is nothing like the majority of these children in comparison, not really sure how to explain,

I just feel like he’s there because nothing exists to suit ds, he’s not mainstream compatible not even nearly, but I think he’s not even near severe enough for this school he’s at, ds has really poor behaviour, and is delayed, has all the disabilities these children do, but he’s not the same.

I got quite the shock to tell you the truth, I’ve seen bits online on the school app, both his taxi drivers have told me they don’t think ds suits the school, I had an idea, but I’ve seen it in person with my own eyes.

A lot of the children are in wheelchairs and I would say really severely disabled. No speech, there was one maybe 16/17 had a dummy, sorry I mean no offence or anything. Just nothing like ds.

Ds showed me his friends, and they were similar, bless ds he hasn’t a clue.

It was also v bizarre, they had children serving at some of the stalls at the fair but no adult guidance so I bought ds some juice, I paid and the girl didn’t know what to do, so I talked her through serving the juice, which cup, when to stop pouring 😳 then the change etc, I just kept thinking why is nobody supervising? Wtf.

This is also how I mean they mismanage ds, Ds played a game rolling some dice, £1 a go, there were 6 squares to fill, ds played 2, and 3 were already filled, I was about to do the last square so they could start the game, then ds male ta came over and had a square to fill the board up, so they rolled the dice and the TA won, it was some big galaxy chocolate bars, the male ta in ds class went hahahaha ds I’ve beat you, hahaha (he was only joking) then ds started crying and the lady doing the game went ‘male ta’ share with ds, and he went no I won fair and square. (He did give him a bar in the end) but he spent about 5 minutes winding ds up and ds was getting really aggro, they wonder why they have issues with him at school….. he has this ta again next year aswell,

We left and Dh said take him out of that school. Etc. just not that simple is it.

I don’t mean any offence with what I say about the other students, that kind of school is clearly suited for them.

I’m just saying it’s not for ds I don’t think. It’s not a correct fit given how ds presents iyswim.

danni I’d probably complain about the TA, I think lots of nd kids would be triggered by that. Also, the games are for the kids, not the staff!

I think why it was he paid to have a go was bcos only one square needed filling to begin the game, ds was getting pissed off having to wait so I said to dh we’ll just have a go to fill it up (we’d just paid for 2 for ds, I only never took the last in the first place bcos other people where waiting so I wanted to give them a chance, then they never had a go lol) and with that the ta came over as ds was kicking up a fuss at having to wait, and he said I’ll have the last square, to get the game going kind of thing, think he just did it to be nice.

it was just how he wound him up, he was only joking with ds but you could see ds was fuming, I’m not sure if he was trying to lighten the mood joking with him, but it wasn’t working and then they say they aren’t managing him in the class but that doesn’t surprise me given how I see him managed during that, saying no im not sharing, or I beat you fair and square and calling ds a loser even if you’re only joking, wasn’t the right way to go about it.

But apparently male ta is ‘highly experienced’, 😭🤣 just maybe not highly experienced with my child..

Ugghh Danni that TA sounds terrible- I think most children would be upset like that. Your DS's school sounds like the closest special school to us which I am worried about the LA naming. It's just finding the right fit isn't it. Do you think your DS needs more of a SEMH school? My friend's son is starting one in September and it seems geared up to those who are academically okay(ish) but who struggle to function in normal school environment. That wouldn't apply to DS as he clearly has a (not officially diagnosed) learning disability. He brought his books home yesterday and it was quite depressing seeing how little progress he has made- there is some.

The Summer Fair at DS's mainstream school was crazy this year. It is in a very middle class area (we are probably one of the less well off families being lone parent and PT) but quite a lot of people complained about affordability. For example it was £2 for each child to havd 5 minutes on the bouncy castle! My 2 had 2 goes each which on top of the food stalls etc made for a expensive afternoon out. It raised £7,500 but I couldn't help thinking that it would have been nicer to have tried to bring the school community together rather than just focus on money making. I didn't voice my concerns as I do feel bad for the volunteers who always get criticised.

Jabberwocky you must be beyond frustrated. If your LA is anything like mine they all seem to be working remotely so no one answers the phone. All of my emails have been ignored too.

Dimples no an semh school wouldn’t suit him due to his learning disability, he is quite significantly delayed, not just academically but socially and emotionally too, he is like a toddler emotionally. Still snatches and can’t share or turn take, has a lot of tantrums, can’t manage his emotions at all either,

He’s a bit more switched on with his school work but he’s still delayed, think maybe at year 1 level some bits year 2, and he’s yr 5 in September, he’s a very good reader though so not year 1 level for that, his speech is quite advanced I would say too given his needs, he uses some really big words in context, can explain things and communicate everything mostly.

Quite hard to pin point exactly his age for his work as you know they are uneven with stuff. He’s quite a mixed bag really, but overall he’s functioning at a much younger level.

My mother in law has 2 children living with her, (they are her husbands grandchildren) they live with her (long story) the girl is ds age and she’s just started walking herself to school on her own 😭 the difference between the 2 when you take in to account them being the same age is the difference between night and day, it’s astounding really. It’s then you see how different ds life is.

Not sure what placement would suit ds, but it’s not where he is, not for long term anyway.

So hard when you literally don’t get the choice and there’s limited things on offer for SEN.

Sorry dimples the main point I meant to say, SEMH isn’t ds primary need anyway.

On his paper work etc. Its communication and interaction, (which I think is common for autism)

Are there any asd specific placements danni? Would moving him for secondary open up more options? Are there any options?

are there other kids at his school who look capable? The ones on the stall serving must have been relatively so to be doing that even if they needed a prompt? At DSs although I moan about his class there are some (older, secondary level) who from my superficial observations seem capable, one girl for eg looks about 15 and I see her walking every day to school alone (along a busy main road.)

I only mentioned it Danni because my friend's son didn't meet the profile either (he has ASD and ADHD) but the SEMH schools seem to better able to manage more challenging behaviours. Whereas your DS's school seem rather flummoxed about his.

I am going to email SENCo now as I haven't heard anything from 'Early' help. So just another organisation to wait for.

In better news I have found two very cheap/free options for helping develop DS's skills in the Summer. One is 1:1 SEN swimming lessons (£10 for 2) and the other is bike/trike/adapted wheelers which is free. DS can't ride a bike at all but refuses to try with me. He also can't really swim despite loads of lessons and going frequently with me ...we can but try. It will also give me a little break. And we're also trying equine therapy (also free).

dimples they sound like a good opportunity. Ds’ swimming lessons have been great.

danni are any new schools proposed in your area in the next couple of years as part of the government’s SEND programme? That might give some more options. Otherwise I guess you have to revisit the provisions that are within traveling distance with a more experienced view on what will or won’t work than you had previously.

There’s an autism school with a provisional date of opening in 2026, it’s not yet being built though, they had planning permission accepted etc, it’s limited info given it’s early stages, but it’s 8-19 years, local - ish, shorter journey than this one, I said to my husband when I see the info it would be worth looking into. Obviously in the future. Definitely an autism school.

Ds really enjoys going to his current school, he likes the staff (when he’s not telling them he’s going to murder them) he likes his friends, but ultimately I think it’s not quite right for him. Given what I’ve said. He’s been there 2 years now, he seems settled (as best as ds can be settled) Just hard to know what to do for the best. He’s going to be there for the foreseeable anyway so I’ll just have to see how things continue to play out..

I got ds end of year report this evening. I got pictures of him helping at breakfast club, (between 9-9.30 his school do 30 minutes breakfast club for the whole school in the hall), ds is buttering toast and pouring juices for the kids, he wears his own little apron 😍 they said this term he’s being trusted to use the toilet alone (it’s in the classroom) as ds was insistent he didn’t want an adult to keep taking him, but the conditions are he mustn’t lock the door and if he doesn’t block the toilet or purposely wet the floor he earns 10 house points each time he is successful 🤣🤣 if he does any of those things, the next toilet trip the staff have to go inside with him.

Ds shouted down to me at bed time, mummy I’ve done something dangerous in my bedroom, I went up, his fan that he has (his bedroom is an absolute sweat box in the summer) he’s pulled it out the wall and snapped all 3 prongs off the plug, why did you do that ds? Bcos I wanted to, then he’s cried for an hour as he’s going to die from sweating, sometimes I do wonder why he does some of these things….

He loves his fan, has it on every night, reminds me to turn it on, can’t sleep with it off, then he does that, that’s why I wonder why he does some of these things.

Danni earlier this evening DS pulled the curtain pole off the wall dislodging one of the brackets (again) and then some how further damaged the blind. He then complained that his bedroom was too light

Not sure what I can do about the window. It is v large and I have carried out countless repairs to the blind and curtain pole. I didn't cover myself in glory earlier and threatened to cancel our holiday to pay for replacements. I am rather stressed about money because the boiler has just died. I can't actually bring myself to replace the window stuff because he will destroy it again. I just saw some stick on coverings from Amazon which are affordable but I will have to measure in the morning. Are any of yours window dressing destroyers? Any advice?

@Jaberwockky that sounds absolutely awful. I can imagine you are feeling very down about it. It also sounds quite a critical stage, it would be such a shame to lose the plot and the more stable future. I don’t know if you have the energy, but I would be involving my MP at this point and going absolutely nuts. Good luck with it all, wish I had a magic wand.
@danni0509 your instincts are probably right, if all the other kids are quite different then it might not be the right place. I’m still looking at secondary schools (specialist mainly) and it really does seem like many aren’t good enough, unfortunately. That male TA sounded unprofessional and lacking in any understanding, which is a worry. Experience just means someone’s worked a long time, and may not mean that they are any good. DS has had several TAs and it’s so variable. The fairs sound too much, constant fundraising is tiring.
@dimples76 DS has also dislodged a curtain pole, he used to wind himself up in the curtain and release himself! I found that phase quite stressful, the only thing that worked was me in the room catching him beginning it and distracting/desperately trying to avoid disaster. But sometimes I do have to cook dinner/use the bathroom! Luckily DS has just generally got more careful. I think I’d have looked at a solution like you, like Velcro or something which had less of a disaster if it came down for both the curtains and them! Although I’ve not much of an idea what is the best safety wise!

dimples when ds was a baby we used a stick on blackout blind from Amazon as our blackout roller blinds still let light in round the edge. They worked super well and was just fabric that attached round the edge with Velcro.

@PimmsandCucumbers I’ll admit to emailing the MP again last night outlining that I was considering suicide (as I’ve said previously, no intent to follow through, but it’s not a nice constant state of mind to be in). Instant response. They’ve gone to the council to demand an investigation and resolution today… but I’m not hopeful.

The LA emailed the SENCO at his current school rather than me. Advised they had no idea he needed to be discussed at panel today. It’s utter bullshit. I made the caseworker, her manager and director of children’s services aware on Tuesday.

I think the house and dreams of stability are totally out of reach now to be honest.

As an aside, I applied for careers allowance and I’ve been rejected on the basis of my degree course being 25 hours per week. Probably a thread of its own, but I’m just a bit confused. It’s part time. I care for DS 24/7 other than the hour he’s at school and study a night when he’s asleep. I don’t suppose anyone knows much about carers allowance and appealing it?

I just don’t know what anyone wants me to do? So by the logic of society I can’t study, I can’t work as I need to care for DS because of the school situation, I can’t do anything socially or exercise as I can’t access care for DS who can’t cope with anywhere ‘busy’ outside of the house. So am I just meant to stay at home? It’s hit a point I can’t even go to the shop as I physically can’t manage him being overwhelmed.

@dimples76 we have some self adhesive black out film on DC’s windows - I’ll try to find the box as it worked really well.

@Jaberwockky sorry if I’ve got confused somewhere (and prob have…), where is DS currently, in a school (albeit not working out?). His placements will have to dovetail won’t they, so he will have to stay there until he gets a better place (we had a year of hell for DS but he had to stay however long until we had found the next place for him). I think you said he was in school, not nursery, but even if the latter he has to go somewhere? What I’m trying to say, badly, is however shit it is he does have somewhere for Sep? Even if it’s not what you want??

@carriebradshawwithlessshoes not at all - it’s a confusing situation overall. Currently we have a finalised plan with no named school (yay… tribunal here we probably come…) and he’s been attending his current school for one hour per day which is just totally unsustainable. As they aren’t named in the new plan they are confident they don’t have him next year, have not got a 1-1 for him, not a class he’s be in, no provision at all for him. So nothing at all for September as I’m aware at the moment.

The ‘finalised’ plan came through to DH this morning. I’m baffled, especially as we discussed the fact he needs to be discussed at panel today.

@Jaberwockky sounds like an utter nightmare. I really hope something happens soon but it must grind you down.

@Jaberwockky so this is a ms school he attended before his accident, you are in the process of sorting out somewhere new, surely legally they can’t say well tough he can’t be here next year/ not make any accommodation for him when he’s not got anywhere else? Can that really be? I would have thought in your circs they would have had to provide additional support for him to access their provision until another is found. Even just temporarily? Why is he only there an hour a day? Is that driven by them or him?