Reception auties 2018/19 - thread 2

[openupmyeagereyes]

Thanks to LightTripper for the thread title. This is the continuation of the thread for parents and carers of dc with autism in their reception year at school. Please join us if you can or, if you have dc due to start reception in 2019, feel free to drop by and ask us questions.

Thread 1

Oh wow that is a lot to take in dimples. Hope he copes at school ok today.

liv it isn’t true though. Times when it’s been chilly and he’s refused to wear a coat he whinges because he’s cold!

dimples that is a lot for him to take in. You’re right, a note to the TA will give her some context. Goodness knows what ds comes out with at school 🙉

@danni0509 how’s the sleeping going?

Open he's had mostly 4am wakeups. (wish there was a cure for this!!)

But he's settled himself to sleep the past 3 nights, I lay him down read his story about 7-7.30pm, put his bed time music on then turn lights off and leave and he's gone straight to sleep 3 nights in a row without me holding his hand he's been asleep by 8pm the majority of the week.

I've noticed he needs his melatonin about 60-75 minutes before I lay him down (the dr told me 30 minutes before, but that wasn't working) so as you said it's not stopping the crack of dawn wake ups or even waking in the night (although he's got a cough so he's waking himself coughing to he fair so not really sure if he'd be sleeping through otherwise yet) but it's helping to settle him to sleep which at the very least is giving him an extra couple of hours sleep a night overall.

And you can call me an absolute nut! but I feel a bit sad that for years he's wanted me to hold his hand until he falls asleep but now he's telling me to go when he's laid down and he's going to sleep alone.. I came down last night and felt a bit

I have a meeting at the school this afternoon (ds has been involved in a social stories trial by the local university) and we get the instructions and story today so thats the reason of the meeting, but when I just dropped ds off, I asked his 1-1 if she could get the pupil support manager to see me while I'm in this afternoon, his 1-1 said yes no problem and wondered why, so I said I would like ds to do full days now.

He's been there 9 months, I've been extremely reasonable with all the reduced hours etc and now its time he attended 31 hours a week like the rest of the children.

And call me a nut again, but I drove home thinking god I'm going to miss him not seeing him all day!

He will be on full days and I'll be at the school gate every lunchtime trying to spot him

I'll let you know how my meeting goes, I'm sure there will be some reason he can't stay all day.

Open I too wonder what ds comes out with at school, since I know what he comes out with at home

I really have to be careful what he hears.... lol He's such a parrot!

Me and dh spell things out if it's something we don't want him to hear.

Sometimes things he says can be so innocent but at the same time sound so dodgy!

Liv sorry about your playground performance. Nothing worse than an audience

Dimples did you write a note to ds' TA. I'm sure they would understand anyway & Good luck with the adoption

Hello to hopesdaddy.

& jeb nice to hear from you. I agree about this group, I check daily for updates.

Hello to everyone else. X

That sounds very tiring danni!

I hope the meeting goes well. I'm doing an IPSEA course on SEN law at the moment and I was reading up on disability discrimination yesterday. They are denying your ds access to education because of his disability which it unlawful. I can't believe that he has been on a reduced timetable for nearly a whole year and with an EHCP. I'm annoyed for you!

This document is really useful on reasonable adjustments:
https://www.equalityhumanrights.com/sites/default/files/reasonableadjustmentssfordisableddpupils_1.pdf

We had another awful pick up yesterday. Luckily ds's teacher was there to help pack up al his stuff while I stopped him from running away! He's been a bit manic this week, I think partially because his 1:1 is off sick.

Open I'm not sure that my ds understands the link between wearing a coat and being warm.

danni I’m sorry that the early mornings are persisting but glad you have gained some time back in the evening. It must be nice for you and your dh. Our starts have been 5ish with the odd 4:30 thrown in, like today. It could be worse!

You are not a nut, I think it’s normal to be wistful about these things when the change happens but you will soon get used to it. They are away from us for a long time during the day imo. I wouldn’t mind the school days being a bit shorter, but I’m not working so it’s easy for me to say.

I hope your meeting goes well and that they act reasonably.

liv your course sounds interesting and useful. I’m sorry your pick up was awful again. His 1:1 being off will definitely have had an impact on him. At least it’s Friday tomorrow, hopefully she’ll be back next week.

Things are ticking on here. Ds spending too much time on the iPad again. I need to get back to the screen time book I think. He’s had a decent week at school I and a trip to the dentist yesterday which, thankfully, he’s so far been ok with. His two front teeth are a little loose so he will likely lose them in the coming months. The dentist said it was a bit early but Google tells me 5-6 is normal.

School said they would increase his hours by a further 3hrs 45m per week.

45 minutes per afternoon, meaning 3hr 45m additional per week if my mashed potato brain is working that out right.

He would be on 23hr 45m per week if I accept.

So he would still have to come home for his lunch hour each day and also start 30 minutes later than the other children each morning.

Haven't agreed to anything yet, I said i would speak to dh & let them know..

I did say when can he stay for lunch though? But she was teaching a class and she had come out to speak to me in the corridor when she see me passing the window and I was clearly holding her up and I was being ushered into my meeting, so she said speak with dh and we will have a chat when we are both free.

So they still won't have him on a lunch. They just won't commit to it.

I got a report from the autism specialist teacher today who goes into school and it was very depressing reading she visited ds at school 6 weeks ago, it says things like

ds hits his 1-1, ds kicks his 1-1,

ds has become obsessed (words used) with another child and is now causing problems as he doesn't understand personal space,

ds follows his own agenda and is very rigid in his thought process, ds behaviour is difficult,

ds requires 1-1 every minute he is at school.

ds swipes things off table tops & empties cupboards,

school reported ds is making limited progress due to his rigid behaviour and difficulty following anything but his own agenda,

ds hits and kicks his mum.

ds curriculum is individualised & tailored specifically to him and he spends most of his day outside with his 1-1.

Ds doesn't stay for lunch as he doesn't tolerate any noise.

ds doesn't understand danger.

ds is demanding and controls adults, he does this in a gentle way to make adults think they aren't being controlled (what the actual fuck! He's not that cognitively advanced to know how to manipulate like that! But he is definitely controlling I will agree with that for sure, but not how she worded it)

The broad of ds development is at a 22 month old level at actual age of 65 months, with his physical development at a 16 month old level (what 16 month old do you know that can ride a bike and take the corner on 1 wheel? lol. His physical is his strongest area!)

And honestly this goes on for 4 pages!! I'm used to reports that outline his difficulties but also at the same time they sing him in a positive light, even his ehcp was quite positively focused, but this was far from that, it wasn't pleasant to read.

I'm the first to say about what ds cant do or does wrong or needs help with and I know more than anyone his difficulties, but reading it from someone else who specialises in autism and put down on paper like this is quite brutal. Bless him

I think what upset me most was the 'ds is obsessed with another child' all that means is ds likes another child, it's his way of how he interacts, he's just a bit full on, but to describe him as 'obsessed' argh!

I think ds will end up going to a special school at some point soon if I'm being totally honest. I've tried mainstream and I just don't think it's working, but least I have given it the chance.

And to top it off, we took him for tea after school, he was pissing about on his chair in subway after being told a million times to sit still and he fell off hard onto the windowsill and injured his back and thigh gave himself a whopping bruise and nasty lump on his leg and then had a meltdown bcos the chair fell over not bcos he'd just really hurt himself that didn't bother him then I couldn't get him back to the car and when I did he was going beserk in the back it's really off putting to drive when he's like that and I think I ended up driving through a red light, it was amber but i had a car on my back window screen more or less so couldn't stop but I'm pretty sure it went red by the time I'd committed and gone through! Stressful.

Last thing I need I've only had my license 7 months I would be totally fucked without my car for ds, so I'll worry about that now.

& his melatonin didn't work tonight either, 3 hours after taking it he's just finally gave in and closed his eyes.

One of those bloody days, LOL.

X

Sorry that was sooo long. Only so much moaning my mum and dh will listen too

I did meet with his teacher and 1-1 at school today, they are lovely.

They really do there best for ds so although I moan about the school it's not them I'm complaining about. It's just the hours situation that's annoying but that's neither their faults.

His teacher for example spends her own money on bits for ds that she thinks he will like, sensory toys and autism bits and pieces and brings them to school just for ds etc she was telling me today her and his 1-1 met up in the holidays and went shopping for ds and both filled a trolley of bits and pieces for him that he would enjoy and they seek support on an autism forum regularly for tips, they do go massively over the top to help ds,

His 1-1 is also fab dealing with him and his behaviour, but after today's chat I don't think ds has her next year it's different 1-1' in yr 1. So god only knows what yr 1 will be like. I will find out in the next few weeks about his 1-1 for sure.

Not sure how that will go down with ds.. not that he'll understand exactly, but I don't think he'll accept that change quite so easy.

I'm sorry danni that sounds like a really rubbish day. Reports like that are so difficult to read. It's always somehow worse when the report it written by someone who has only met/seen your child briefly.

Have you looked at any different settings for him? It sounds like he has quite a challenging time at school. Even though we're pretty happy with ds's school I'm going to start looking at other places this term in case we decide to move him next year.

I hope your ds has had an earlier night tonight so you manage to get some rest.

danni a quick post now, I’ll write properly tomorrow. for you, what a tough day you’ve had. You’re an amazing mum to your ds.

Danni, what a day! Hope that you're having an early night. I have been quite lucky at having reports which emphasise the positives as well as the problems. That's amazing that your boy can ride a bike and as you say, that is definitely 6 years+ level not 16 months! Does your son behave v differently at home and school - whenever I saw my boy's physical targets at nursery they were always things that he had been doing for ages at home, e.g. walking down the stairs but he appeared unable to walk down the stairs there.

I really hope that you get things sorted with school (although his teacher and TA sound lovely) or find a better school for him.

We have had a day of two halves. This morning I was really fed up as we were waiting for over an hour for an ENT appointment which turned out to be a waste of time as they couldn't do a proper hearing test. So DS has been re-referred for a hearing test and then we go back to ENT ...I came out of the hospital to a message from my sister to say that she had heard from the Council that they are opposing her appeal (against refusal to assess for EHCP) so it's going to have to go to the Tribunal. At this point I decided not to take DS back into school for the afternoon and went to a country park instead. It was so nice having the 'big kids' play area to ourselves and just to have fun - I'm so glad we did that. The only downside was that as he went to bed DS was pleading to do the same tomorrow and not go to school.

How frustrating about the ENT appointment and the refusal to assess dimples. I hope the LA back down before the tribunal.
Sounds like a lovely time at the playground though. I hope your ds is ok about going back to school today!

dimples I’m sorry about the ENT appointment and the refusal to assess for your ds’s children. Hopefully they will cave before the tribunal but how stressful for you all. I hope ds went in to school ok today

danni I hope you’ve had some time to process yesterday and that you’re feeling less raw today. It’s so hard to hear about our children’s difficulties. Some professionals are good at getting a balanced view and some just aren’t. As you said, you know best what he is and isn’t capable of. It sounds like the teacher and TA are doing their best but this school isn’t quite right for him at this time. I know you weren’t keen on the local special school because of what you’ve heard but maybe it’s worth going for a visit? It’s a difficult one

An interesting day here. I got a call from ds’s school about 11 to say he’d had a poo accident and was a bit upset. They weren’t able to clean him up because he doesn’t have an intimate care plan (they had given him some wipes to try and clean himself up!) and could I go in . I wasn’t at home so it took me a bit longer to get there, on the way they called back to tell me one of the TA’s had cleaned him up and that he was now happy and playing.

The teacher called me at lunchtime to confirm he was ok and that she would sort out the paperwork. But then a little later I got a call to say he’d had another accident (this time, after our chat, the teacher had helped him straight away). It turns out he’s got a tummy bug and probably just couldn’t get to the toilet on time, poor thing. Anyway, I went to pick him up, gave him a shower and he’s been once more since. It could be an tricky night 😷

Open, hope DS feels better soon.

We have only had one toileting accident this week which is a major improvement.

This morning DS said 'we've missed school, it's too late to go now''. Me: No, DA it's 06:30 we have two hours before we need to go to school. DS: Oh
He then went to school with no problems - phew!

Glad school went ok today dimples.

Hope your ds is feeling ok open.

Another fairly stressful pick up here but thankfully it's the weekend and ds's 1:1 is back next week!

dimples that’s great, real progress.

liv hallelujah for the weekend!

@danni just reading through your post about your report - that’s rubbish. Reports should always be outcome focused these days, there’s no real need or benefit to just listing “problems” - what you need is professionals seeing and witnessing the difficulties, talking to yourselves and school about what YOU want for your child and then suggesting and trialing strategies to help them get there. Professionals need to be the ones who can see a “problem” behaviour and understand the root of it and what needs to be adapted and changed in their environment to help them cope better. All children have strengths and these strengths need to be harnessed to achieve the goals that parents and school have. He likes being outside - great, let’s use that to develop some activities that can support his abilities to follow adult lead tasks. He likes another child, brilliant let’s invite them into turn taking interaction games to help teach your ds. It sounds like all you got was a list of negatives with no real plan for progress which is really outdated and unhelpful. I’d be tempted to put in a mild complaint or question and ask the advisory teacher what her proposed outcomes were for the time she spent with your son. Did she really just set out to write a report describing his difficulties with no plan? If so, what a waste of money the school have spent!

Sorry, rant over. I’m angry for you!!!!

@Jeb86 there was a page at the back of the report with strategies to use (but we are mostly doing these things already at home and also at school)

There were a few positives scattered in such as ds can count and recognise numerals to 20 and beyond, knows all letter sounds and recognises some tricky words, can blend a little etc, that he allows peers to be near him now and will kick a ball back and forth amongst other children.

To tell you the truth I was peed off when I first read it as it's more negative than I'm used too, but it's been filed along with the rest under the bed and I've forgotten about it now.

How's ds? Not long until he starts school! Any more news on the EHcp or anything? X

Open how's ds now?

@dimples76 good news on the accident front.

We've had quite a few this week... ds decided to stand and wee all over the floor last night bcos he wanted to earn a red sad face sticker on his chart, so i just said I've lost them ds we don't have any red faces left only green happy faces, he didn't like that very much.

I'm pleased you enjoyed your trip to the playground in the afternoon, I would of done the same.

Liv I haven't yet looked at any other school just in case we need it. I hadn't planned too, I think if I do it will be the special school I can't imagine another mainstream would have him or suit him, but I'm not sure if he will have to go special yet? It's hard to know what to do for the best isn't it..

danni he was fine overnight and seems better today thankfully.

The teacher emailed today to find out how he was and to let me know she’d spoken to the SENco about the intimate care plan. The SENco said she didn’t think ds had a medical reason for one. I pointed out that autism is classed as a disability and that that should be reason enough. It was nice that she got in touch. Hopefully we can resolve it next week. I will see the GP if I can’t get one in place otherwise.

Gosh, what a palaver. I’ve been reading about other people’s problems in this area, children being left soiled etc, and naively thought it was something we didn’t have to worry about. On his third transition day at school (first without me) ds had an accident and his (previous) teacher cleaned him up and never mentioned that one of these might be a good idea or needed. The school dropped a ball there I think.