Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed
Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2
Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3
Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4
Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1
Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Sorry I only pop in now and again.

Ds has had another student join his taxi, a 19 year old 😳 I know he has to get to school too but it’s the age thing for me, he’s a grown man! Imagine if he kicked off and whacked ds one.. it’s the same difference as putting ds and a newborn baby together.. I’ve heard they all wallop each other in the taxis, the PA’s have told me before. I’ll be livid. (!)

Ds has always been alone due to his needs and now the council are cutting money from the taxi company, the taxi have complained and said it doesn’t suit ds (he can’t stand chatter in the car, they sit in silence on the way home) and he’s lashed out multiple times if there is any noise. The taxi made it very clear that it’s not suited to ds and find another solution.

anyways, the council have said tough basically he’s coming in ds car it’s only until July. The taxi manager said they have a similar child to ds and they’ve stuck 2 in his car last week. Money above everything as usual.

taxi company said trial it for a week if it’s not working she’ll complain and I will too..

I don’t think I updated previously either, his original driver of 2 years got sacked (for reasons they wouldn’t tell me) and he has a new driver and new PA too. All thrown together on a Sunday night, what a polaver. He had a really good relationship with old driver too so it was quite a shock.

anyway ds has been fine with the new driver and PA for the past 2 weeks and I’m so proud how he’s coped.

The 19 year old lives 15 mins from us and starts in ds car on Tuesday so I just hope it doesn’t impact ds, he’s sitting in the front with the driver, and ds and his Pa are in the back…

The other student stays at ds school (it’s a residential school, ds is a day pupil) 2 nights a week so he’s in the car 3 times a week with Ds. Just hope it all goes well as ds is so sensitive to noise in the car.

Also the taxi company told the students parents to warn him to be quiet, so not to kick ds off. But I intervened and said that’s not fair, as the 19 year old will have his own needs so might not be able to be quiet, I totally understand this and that the world doesn’t totally revolve around ds.

I’ve spoken to ds and told him to talk to the other student etc, I would never expect him to be silent for god sake but same time don’t need ds attacking his Pa like previously, just pisses me off why they change things when it’s worked perfect for 2 years.

danni that’s annoying, and stressful. I hope ds takes it better than you expect. How strange about the old driver & PA.

Hope that it's not as difficult as you fear Danni I suppose at least if the 19 year old is in the front that might keep the disturbance low. Would your DS listen to music or anything in the taxi? It does seem like a v odd pairing.

DS looked so delighted to see me in his classroom. He joined in helping me read to 3 groups of children. It was really lovely. DS's teacher let us go early so we picked up DD and celebrated skiving by going to McDonald's.

@danni0509 argh totally imagine the stress about that - totally valid. Have had the same when looking at eg after school care which just groups everyone in inc 6ft5 17yo guys w toddlers.

thanks For good wishes, DD is past the illness mostly (only good part was that she slept more.. but always such a worry when she’s ill and have no idea what she’s feeling)

@dimples76 how lovely re the reading!! Super sweet that he was happy to see you

That sounds perfect dimples

Ahna glad dd is better.

Thanks so much @openupmyeagereyes @livpotter @UnoQueenie and @LightTripper for such a great explanation - it makes sense that they might be talking about a preliminary assessment as all they've had so far have been a couple of telephone appointments with us and lots of paperwork from us/SLT/school.

I don't know why it hadn't occurred to me to look for local SEN groups on Facebook as I'd joined a few big pages. Googling local offer (a phrase I hadn't come across so far) has brought me to a page which looks really useful so thank you for that suggestion too.

Think I need to go and turn the house upside down trying to find his red book. I kept it with me for ages so it will be infuriating if I can't find it before the appointment 🙈

Dimples from what I understand from my ds taxi driver regarding the pairing, the 19 year olds taxi contract was due for renewal with a different company and since he leaves in July the council have thought Chuck him in with ds and nothing needs renewing. The student doesn’t live miles away from us so I imagine they thought grab him on the way.

I don’t know if his current taxi company charge anymore for it, but if they do I don’t think it can be much as it’s not per child its per run if you see what I mean, and they were doing that run anyway for ds. I don’t imagine they are doing it for free but it will be some saving for the council or they wouldn’t of tried it.

I get they are trying to save money, but they don’t think of the aftermath. Shit like that can stop kids from wanting to go to school.

How has everyone’s week been?

Ds has had a good couple of weeks but today was quite wobbly, unfortunately.

I had another chat with the EP yesterday, though she hasn’t really seen much of ds yet. I found it quite frustrating in parts though I think it is largely my own fault. She talked a lot about spiky profiles and things that autistic children can find difficult in general, like inference. I think I was hoping we’d be able to understand where he sits compared to his peer group but she was maintaining that you shouldn’t do that because they are all different. I can see that but I can’t quite see how that ties into the school curriculum, where his reports say he’s supposed to make x progress per academic year. Surely if you want to work
out what his strengths and weaknesses are you have to benchmark against something?

Which reports say he is supposed to make x progress Open? Do you mean academic progress? How would they know? From my limited experience of the SS system they forecast nothing, they just observe and track against age related expectations, I suppose is that more important than tracking against peers? What is it that you are wanting to get out of the EPs involvement?

Then as they get older at DS school they apparently group and teach according to ability so I’d imagine for DS he will end up in a group of similar abilities.

So in terms of where he is at, when I last met with the teacher she had a full list of checklists for age related skills, I only glanced but there looked to be about 50 items on each. One list was for reception, one year 1, one year 2, one year 3 and so on. DS had a multitude of things achieved but not achieved on each one which she says highlighted the spiky ness as you say. I suppose for him the goal is for them to get as many things highlighted on the age appropriate list but I don’t think they would ever forecast x as they don’t know.

their story has always been that the first goal is to get him settled so that he can perform to his best. I don’t know about the Ed psychs role but isn’t it more to work out why DS is struggling to be there full time etc (I assume he’s not still?) and to try and get that level foundation so then school can work on other skills? In the same way (but for another reason ie his hyperactivity!) my DS needs that level foundation.

how was it left, do you see her again?

Week has been ok though DS not been v well a couple of days. He seems ok now. School aren’t very happy with me as they passed a message on via the bus re the toilet situation last week and I emailed them to ask them not to do that. I think they think I’m high maintenance and probably making a fuss over nothing. Do you think messages should be passed on via the bus? I know we have talked about this with Danni. They have my email and a platform so they could email me direct.

carrie ds’ school is different, they do have an academic curriculum. They say children should make x progress each year and ds’ progress is measured in his reports assessed by his teacher.

I am hoping the EP can provide some strategies that will help ds feel safe which will then lead into helping him stay longer and engage more with work. I was also hoping she could assess what he finds difficult - eg processing speed. This is what led to our discussion. It was an impromptu meeting as we bumped into each other.

No, I don’t think messages should be sent via transport. Yadnbu.

Would you say the children there are more high functioning Open? I know we all hate that term but you know what I mean. DSs is a total mixed bag.

thanks for that re the bus. I always question myself!

I can see where you're coming from, Open - I thought when DS was seen (will not describe it as assessed) by Ed Psych last year that they would unpick where some of the difficulties lie to help develop strategies. DS's EHCP states that it takes him longer to learn things but there is no why - I think that is probably due to lower IQ (but not assessed), or could it also be poor working memory or his concentration issues (?ADHD and/or SPD).

I contacted some of the secondary special schools to see if I can book in a visit earlier. So hopefully I can get some visits booked in.

I guess most of you won't be in this position as the older children are in SS but DS's year is going on a residential trip in September (2 nights away). DS has heard all about it at school and thinks that it sounds v exciting. DS has only ever stayed at his Granny's if not with me. His TA spoke to me briefly about it yesterday and said school are really keen to enable his attendance and that if he goes she would be going with him as well as another member of staff for him. The thought of it makes me so anxious but I don't want to hold DS back. I have full confidence in his TA and know she would call me if she thought he needed me to collect. I think if DS remains keen we should probably give it a try...The place looks amazing, it's in the Lake District which is just under 2 hours drive from here.

On a completely different note have any of you watched Extraordinary Attorney Woo on Netflix? It is a Korean drama about an autistic lawyer. I have binge watched it - makes me laugh and cry.

carrie yes they are and they are all autistic.

dimples it’s exactly that - understanding the why. I think we are most likely not going to get that sort of assessment unless we pay privately and even then, if ds is not compliant, we may not get a complete answer.

Probably for now we just need to worry about getting that stable base sorted out (if we can) and work on unpicking the rest later. I’m just very concerned that it’s now been 3 years of part time/no school.

Posted too soon… I was hoping we could look into things more thoroughly. They seem to think that if he is more settled and happy the learning and longer days will naturally fall out of that, any maybe they will but I’m not convinced.

dimples I can completely understand your anxiety. It sounds like the school is doing a great job to include him. What are the sleeping arrangements?

Thanks for the Netflix recommendation, I haven’t seen that when scrolling through. We’re watching the Three Billboards movie which is very good.

yes they are and they are all autistic.

That said, from my observations their presentation still varies a lot.

That's a good film Open. I hardly watch any films any more as my attention span seems to have shortened. I enjoyed Only Murders in the Building, 30 minute episodes really suited me

dimples we have to watch them over a couple of nights. I really enjoyed only murders in the building. Looking forward to the new season.

@carriebradshawwithlessshoes yeah annoying re messages through the taxi - why though from their perspective? Doesn’t seem easier necessarily just a bit odd to think that makes sense

we went to the beach as was a nice day here. DD immediately ran for the sea and had an absolutely huge meltdown that she wasn’t allowed in (like, fully in). Feels like we just have to stop taking her anywhere with water as this happens every time. Any tips?!

Arm bands? 🤣

Ds does the same, last Sunday we walked along the beach. Ds wears his welly’s and a waterproof suit as every time without fail he goes for a swim, he does it in puddles too, fully submerges himself.

We tend to do the beach last thing in day if we go, so we can get him straight home and bathed and cleaned up, and we deffo don’t take the car it would be wrecked (fortunately we live 10 mins from the beach so can easily walk)

Ds is riding his bike properly now, he could ‘ride’ it 2 years ago as in without stabilisers and pedal it but he couldn’t steer and wouldn’t listen to instructions so kept crashing into people and falling off, so I put it in the shed and didn’t get it back out for one reason or another. (Ie too much hassle)

Got it out again today pumped the tyres up and honestly 5 mins on the park and he’s riding it perfect, steering / braking / stopping fine. We have a big park so he did a few laps on that, was on there nearly 2 hours 🤣 couldn’t trust him down the street so we’ll stick to the park.

He couldn’t balance 2 years ago hence the falling off every 5 seconds..

He only fell off once in 2 hours today, much better.

We had a CAMHS review last night, he said his adhd medication seems to be working for him (I agree) he said atomoxetine only works for a small number of patients but when it works, it works.

He wanted to increase it, he’s on 18mg a day (which is literally just a starting dose, he’s been on that almost a year now) he wanted to double it to 36mg due to ds weight, the 36mg is the correct dose for his weight. (Atomoxetine is a weight based medication.)

I declined. I don’t see the point, especially doubling it, he’s getting on ok, not fantastic, but also not dreadful, I would rather increase his medication when we need too, he’s being ok at home and just his usual at school, so I’ll leave it hanging there as an option.

(I don’t like him taking medication at all, but understand he definitely needs it, so we’ll do with the minimum we can cope with)

He has another review in July but I can ring before if I want to change the dose before the appointment.

Great re the bike Danni! I wonder why after all the promotion (it was promoted to us!) they admit atomoxetine only works for a minority?! I agree, do what you are comfortable with dosage wise. You can always play with it later.

ahna, bearing in mind temps would she fully go in? DS hates the cold so I struggle to push him past that point in the sea where it goes from freezing to bearable (you get that even abroad.) So here he would run to the water then as soon as it was I don’t know less that knee depth he would be like aaaargh! And come running back. For that wellies and waterproofs would suffice.

dimples, my friend with the DS who reminds me of yours is having exactly this too, it must be residential times of year. She’s nervous too. Could you have a night with DD in the lakes too if it would make you more comfortable? Kind of on standby if it would make you feel better.

re the bus Ahna I think they just probably had a thought when loading DS onto the bus and saw fit to tell the bus people to pass it on. I don’t think they saw it as private or inappropriate. Just, oh can you tell Carrie xxx when he gets off. I suppose I can see it either way…

just been out for dinner with DD. She wanted to go just us. At the last minute she saw fit to plaster on my bright red lipstick and found some strappy summer top which she insisted on wearing with a wool scarf thinking this was the ‘look.’ DH looked horrified. Fortunately we had a table in the corner… started to argue with her then really didn’t have the energy so left it.

I’ve been a bit worried about DD of late. I say she’s nt and I think she is but sometimes I wonder. In 6 years at school she’s found no real friends, she seems to befriend the waifs and strays (fine her choice) but none of them are that bothered about her despite her really trying. She doesn’t read people at all well eg I’ve noticed her talking to people incessantly when they aren’t interested. She’s not in the trendy or popular gang and I often see her really trying with people and them just blanking her (all of the aforegoing bring children, she does far better with adults.) She often asks girls to stuff and then is upset when she’s not asked back. Just stuff like I saw her smiling shyly yesterday at a couple of girls as they were all walking out of school, she said bye girls, have a nice weekend! They just ignored her (she noticed.)

DH says girls can be bitchy and cliquey and I remember that too. Maybe I’m just paranoid given DS.