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

danni frustrating re choice. Does this include independent schools too? There are a few here that I had never heard of that have children with more challenging behaviour, they have boarders and day pupils.

I agree 1:20 is a long journey. There are a lot of kids at ds’ school that have an hour trip, I don’t know if any travel longer than that though. And agree, no point moving until you are certain he’s settled even if you wanted to.

Hopefully the minibus works out.

dimples glad you’re feeling better, was it fluey symptoms?

Ahna hope swimming goes well. Is it a SEN class? Ds loved swimming but at that age would really just do his own thing.

@openupmyeagereyes yeah a SEN class but indeed she didn’t play ball at all (as expected), they said it’s not going to work. I was really hoping bc I find the water situ such a worry without her being able to swim but seems like anything other than one on one won’t work. At what age did yours start swimming?

What on earth did she do that meant they’ve given up after one lesson? Absolutely ridiculous for a supposed SEN class. I guess it’s as others have found, not the right kind of SEN!

I think trying to find a good 1:1 who’s going to be patient and work with her is your best bet. Speak to people at the school and try and find someone through word of mouth, that’s how we found our teacher and she’s brilliant.

Ds has always loved the water but only really started to swim properly and make progress at his school lessons, so about 7. Even so he’s made much greater progress in a shorter time with 1:1 teaching. He can do butterfly now

Ds has been swimming this morning, he doesn’t do private lessons (couldn’t find anyone to take him on 1-1, although he is on a couple of waiting lists)

he does however do them at school ‘’weekly’’ but all dependant on staff ratio, 2 out of the last 3 weeks a member of staff has been ‘sick’ and ds hasn’t been able to go, which causes meltdowns in itself, and it’s always the same member of staff (I ask ds) she’d of been sacked long ago for me, why her shite work ethic has to impact ds doing his lessons is beyond me, it’s not fair on the kids at all. Its not a recent thing as it was the same 2 staff members last year several times that let the kids down with them being off. Also what I don’t like at ds school is the swim teacher is quite sporiadic in attendance and the normal staff just get in the pool with them so it seems.

I just take him to the leisure centre now weekend, or this morning the leisure centre in the next town which is a bit of a better pool and it has a McDonald’s across the road so we do both.

He can’t swim on his front at all, but can swim on his back, not sure if that’s standard lol but it is ds and he learns back to front. He’s only been swimming on his back without a float since this morning 🤣🤣 he could only do it with a float a fortnight ago when we came, but he’s not had the float today and did it really well, we were in the pool 1hr 45m as he didn’t want to get out.

@openupmyeagereyes quick question if you don’t mind.

I know you claim mileage for ds school journey. Can I ask, do your council drop the rate after a certain number of miles? So from 40p down to 25p or similar, something my council said recently to me,

need to check before I think of plans for the future if ds can’t do transport anymore.

I have been told by transport, any more than 100 miles a month they pay a reduced rate, so 40p a mile for the first 100 miles (that 100 miles will be done in 1.5 days!) then any mile over the 100 is 25p.

So for the majority of the month (you’d may aswell say all of the month) I’m transporting on a rate almost half.. I’ve doubled checked with them and it’s most definitely over 100 miles.

3 hours a day of my time. Plus wear and tear on the car. Aswell as all the fuel (I put a fortune in last week transporting ds) I’m just trying to work out if it’s a reasonable amount or will they will be just taking the piss and in actual fact it’s costing me money (which I don’t have) to take him myself.

(We are thinking of getting a second car to ensure ds gets to school, if it’s necessary down the line, so I’m trying to work out calculations)

Ive googled and I can’t see anyone else mention the reduced rate…

Pm me if you prefer.

danni 100 miles a month is ridiculously low. No, I get a flat rate of 40p per mile and it’s based on 690 miles per month which is the annual mileage paid over 11 months. I know someone in a neighbouring county gets a flat rate too, though a higher rate and they travel further.

Let’s hope the minibus solution is a success 🤞

Thanks open for your quick reply.

I think I’ve been told the wrong information by the transport manager himself, it didn’t sound right.

Im going to phone them Monday.

Yes I’m crossing my fingers too as it makes sense all around for him to go by minibus. Saves me all the aggravation, but I know ds,

and the company they use aren’t exactly above board, always an issue with them, so I don’t think it will work long term but I’m hoping it works ok for now.

I have just checked my email and it does say the above info I said so I’m sure that’s what they pay as they said it over the phone then separate on an email.

How ridiculous, stingey fuckers!

But that’s less than 5 miles a day, surely it’s an error?

I would hope it’s an error. But I’m not so sure. He said it twice on the phone, I double checked on the phone. Then the woman who works in transport has sent me an email, with the same info, I’ve just read that again, so I don’t think it’s an accidental error 3 times by 2 different people.

I’ll call Monday and report back. I’m not accepting that though, I’ve read loads tonight and it doesn’t seem to be standard with councils. I don’t see how mine should / would be different, I wonder who I would go above to speak too? I’ve spoken to the actual transport manager. Who would his manager be?

I may put a post on the SN forum after I’ve spoken to the council, to ask if anyone knows who I contact, I don’t see how my council are paying different rates?

All surrounding councils are paying much more, even the council that ds school is situated in! Is paying 45p a mile for ALL miles.

Ignore that random exclamation.

I mean it probably is true, they tried to ask me to be the PA (free of charge) And then when I said no not happening (it isn’t) and that I now wouldn’t be able to get him to school they threatened me with social services 🤣

Ill get advice on this and update on Monday.

Danni why do you think you may have to take him? The bus/ seating as you described it sounds pretty foolproof?!

Danni I really hope that the minibus solution works out - it does seem well thought through. That mileage allowance seems bonkers. All that driving must be v tiring as well. Mind you as you lasted nearly 2 hours in the pool you clearly have more stamina than me!

Ahna DS did lessons with me in the pool from 18 months to 5 years old. I then tried 1:1 classes but the teacher said that DS couldn't concentrate/keep going for 30 mins like that. Since then (so for 5 years) we have tried individual classes, group classes, school swimming and SEN lessons. However, he can still barely swim - I think he can do 5 metres. We used to go swimming a lot as a family but I haven't dared return since early Summer when DS pushed a baby and tried to shove DD over. This Summer we managed to access some 1:1 SEN lessons. There were about 10 of these lessons going on at once - it was quite striking how much weaker DS was than the other SEN kids. I am sure DS has dyspraxia but apparently he can't have that diagnosis as he has global developmental delay. But he really struggles with swimming despite loving the water and pedalling, hopping, skipping etc.

Dimples, I think dyspraxia is one of the most comorbid conditions with asd and development conditions (according to the Head at DS school). Hugely frequent as a diagnosis. That said I suppose the label matters not so long as the therapies are targeted.

DS could not do a swimming lesson and cannot swim. Is the instructor on the side? In which case he would just blankly ignore them whilst he did what he wanted in the pool. Even if they were in the water he would be reluctant to copy, he would still be totally self driven and because he was enjoying it, more so. It’s not a priority atm, he sees the sea (to go in) a couple of times a year but I’m glued by his side, pool wise the same as in hes always with me. He wears an inflatable swimsuit in a pool. As he presents atm I don’t know how we would move on from that. DD isn’t s great swimmer and despite being NT struggles with riding a bike (massive fear of falling off then crashed into neighbours parked car!!). So not great. Both love the water tho so we do that often but swimming out of depth doesn’t happen much.

Carrie just his boring taxi company, boring miserable drivers and PA’s. I’ve had these idiots for 2.5 years now so know the drill going forwards. There is and always has been some kind of issue. So I’m not holding my breath. But equally I hope I’m wrong as it will save me so much additional stress.

I then tried 1:1 classes but the teacher said that DS couldn't concentrate/keep going for 30 mins like that.

dimples based on that did they say no point doing the lesson at all or did you decide it was not worth the money if so?

If it’s the former then it’s a problem. It should be expected that a lot of kids with SEN are going to struggle to engage with teaching for a whole 30 mins. Why can’t it be a mix of instruction and fun play; over time they’re still learning. As we know, it just takes them longer.

I use ds’ DLA to pay for his lessons. When I was arranging them I told her he likely would only engage for half of the session (that was optimistic tbh based on how much he did what I asked him to do when I took him). I said I was fine with that as he’d still learn something and have fun and she agreed.

He actually did far better than I expected but on the days and times where he doesn’t she just plays with him, lets him collect diving sticks etc. it’s not a problem at all, she never tells him off, she just thinks of different ways to try and engage him. I think she enjoys it too. I’ve seen her with another child who has more severe learning disabilities and she’s great with him, he can’t swim.

I’m praying she stays at the pool and doesn’t change jobs or move away…

Yeah I think although a SEN class of sorts, the others were ‘easier’ - tbh when DH found the class I was pretty sceptical how it would work with not total 1 on 1, if she doesn’t follow any instructions whatsoever. DH was pretty downbeat about it but i really don’t know what he expected.

I think she probably needs to just learn by feel a bit? She does well in a costume w those floats in, and I think if we gradually removed them that could work, she has the right sort of motion already. But the good thing about a class would have been access to an otherwise empty pool. If we lived somewhere with less water everywhere I think I’d just wait a few more years. But it is a weekly worry for me that she will have a horrible accident.

Ahna it is a shame that they gave up after one session. Sounds like 1:1 would be better.

Open the 1:1 feedback was from a general not SEN teacher. I probably could have pushed it but I didn't want someone who was not enthusiastic about teaching my boy. The other problem with that one (and some of the others we tried) is lots of lessons taking place at the same time in the pool - sensory overload and harder to hear instructions. I really landed on my feet last term with DD as we booked a group class but only I signed up. It was a private pool so there was only DD, me and the teacher in the pool. I was hoping to get them to take on DS as well but they're not teaching older kids - seems a bit nonsensical when DS and DD are currently same ability. The search continues...

dimples that makes more sense but honestly just shows a complete lack of flexibility and ableism doesn’t it. Any 1:1 should just meet the child where they’re at.

I mean if it’s 1:1 they’re not holding anyone else up.

Hi all. Just updating. Thought you’d may like a laugh!

ds ‘’minibus’’ arrived this morning, absolutely hilarious, it’s just a large family sized car. Nothing mini bus about it. The council are paying the company extra for a mini bus…..

He’s supposed to be sat on the back row but his harness couldn’t be fitted on the back seats due to how it has to be installed, so he’s in the middle row, then the PA couldn’t fit on the back row as she’s a larger lady, she literally couldn’t fit in! so had to go in next to ds in the middle, so that’s solved absolutely nothing.! He’s sat right next to her.. his risk assessment states he’s not allowed to be seated next to his PA.

Then for the best bit…… it was the same driver who was swearing at ds !!!!!!!

I said why on earth have they sent you? He said that he only swore due to ds putting them at risk and that it wouldn’t happen again, he was sorry etc. Ram your apology.

So I had to let ds go with them as it was 8.30 and he was going to be late for school and he was getting agitated waiting whilst I spoke to the driver,

I’ve had to phone the taxi office as soon as he left. She was full of shit. Saying she’s got 6 drivers off with Covid and can’t do anything about it, I said he was supposed to be ‘suspended’ she said we’ve spoken to him and it won’t happen again.

Then she had no reasonable excuse why the ‘’minibus’’ is actually just a family sized car. Also she hadn’t payed me that reimbursement of fuel from last week so I had to ask for that for the second time, I literally spent £70 driving ds to and from school last week, she said she would reimburse me last Tuesday then I didn’t hear from her again, honestly the company are a right shady outfit.

Ive rang the council and spoken to the transport manager regarding the mileage I wanted to enquire about, and my concerns over this morning.

He said that some councils offer a personal transport budget (PTB) split over equal monthly instalments so that will be what you receive open. My council still do the old mileage system, it was updated on the 23rd September by department for education and transport so that they now pay a flat rate of 45p for all your mileage.

I said that he didn’t tell me that last week and neither did the woman from the same department by email.

So anyway I would be paid 45p per mile for all of my travelling.

He agreed that if I decided to do that, I didn’t have to give any more than 1 weeks notice to terminate the contract with the taxi company (usually they ask you to finish off the school year as this is how the contracts are paid in advance) but because ds transport is currently not suitable they would waiver that period. Lucky me.

So now I have to try and work it so I can take ds but it’s not aligning with dh and work, all such a PITA.

Danni I’m sorry I really know it’s not funny but that has given me the best laugh today! In office but will reply properly later x