Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

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

Open, do you think that if he’s spending a full day in school (which hopefully he will!!) that may naturally affect it anyway ie there will be less time in the house for screen time, he will be engaged there with other stuff which may knock into home?

If we are home all day there’s limits to what we can all do… the variance of school and just being in a different environment could have a big positive impact on him.

Yes carrie absolutely. But as you know, we have struggled to get him into school for the last year.

Yes. Have you asked them what they suggest if that happens and what they would do or will you just see what happens?

We discussed it briefly last week via email, also because at that point we were struggling to get him out anywhere. That seems to have passed for now, thankfully.

She suggested social stories, she said they often do help and take them in even if it doesn't seem like it. The comic strip versions might also help. Today we met on Teams and ds came to say hello/goodbye briefly, which is progress. We discussed it some more and she said they are willing to think outside the box in order to get him in and feel safe and happy. For instance, they might get some pets into the forest school area. She said that she will arrange for his teacher to come here one morning, his old school refused to do this because of Covid and she will send some more photos, which he always likes seeing. They are aware that this might take a while and they seem willing to be flexible. I've also asked for any advice about managing the screen time obsession.

Open DS spends way too much time on his ipad. I put time limits on it to break up his time on it and find it works better when the device stops working than me telling him to stop. Then I'll do a first xx and then ipad. I find that we're having less conflict about screen use (even if it's way too much) I am trying to increase the length of the activities in between going on the ipad. He is really into hide and seek at the moment which helps.

Carrie don't worry about suggesting it but yes money is tight for me as I'm supporting us on my part time salary (fortunately I get DLA and adoption allowance for DS too). I may need to pay an OT to give evidence at EHCP appeal hearing if it comes to that so I am prioritising that. The psychologist at CAMHS said that the SCAT team would consider differential diagnoses too - from what I can recall those of you whose children are diagnosed ADHD that was a separate process, but I think that most of them were under 6?

DS's TA has observed DS having an absence today too. I hope that we don't have to wait too long for an appointment

dimples good that the TA noticed too. I hope they can see him soon.

Hope everyone's having a good weekend.

Tricky one with ds today for various reasons. Nearly bedtime

Ds got a postcard from school this morning, I didn't know it was coming.

It was from the head teacher to say well done for an excellent swimming lesson on Thursday

Aw danni, that's sweet. I think NOW it's nearly bedtime...

Daily tantrums here, it's rather tiring tbh but at least dh was around today. We had a lovely playdate at some friends on Thursday which was much better than the one we had earlier in the week where the boys barely spoke to each other!

In my head it was bedtime when I posted at lunchtime. Lol! Just waiting for ds to get sleepy now which isn't looking too hopeful at the minute, he's been up since 5.

I've just read a reading book with him (level 9, gold) he read it really well, from that set open 'the sleepover' he read a couple of pages of that one before and got bored. I didn't know if he got bored because it was too long / tricky for him, so went down a couple of levels. He's just read 8 pages of it tonight, he did really well, didn't get any words wrong / didn't struggle with it.

Bores me with his school, they don't have a reading scheme and don't send any books home. He had bug club at his old school and would get books added every month, we did it every night without fail.

They seem to neglect education at his school, what school don't send a reading book home or have an online reading scheme?! When the child can read anyway!! Even the local special school here having a reading scheme, I see it on their website, yet nothing on ds' and in 9 months he's never been sent anything home (not expecting homework, just a reading book, he's in year 3 for god sake and has been reading since he was in reception!)

That does seem rather rubbish re school and reading books Danni. DS's school reading book hasn't been changed since a couple of weeks before Christmas but he does have bug club. I am meeting his teacher and TA on Tuesday (this was meant to have been in the week after October half term). Not v impressed with juniors so far.

Got an appointment through today for this Tuesday morning re the seizures, never thought that it would be that quick! I have 4 DS appointments this week as well as my Gran's funeral. I had my appraisal on Friday and my line manager said that I need to be more disciplined about focusing on my research. He also said that I could not have a day's compassionate leave for the funeral. He's all heart!

We went swimming today. It probably is too ambitious taking the 2 on my own but they both love it so much. It was fine today until after we got out the pool and DS starting screaming because I asked him to get out of the shower and DD was crying her eyes out due to the screaming and the cold. Any way we eventually made it out but I felt a lot of v judgmental eyes on us.

That’s very frustrating danni. Ds’ new school has an online scheme apparently. I’m not particularly happy about that as he already has too much screen time.

Sorry, I missed your post dimples. Great that you’ve got an appointment through quickly for ds. I’m sorry about your manager not giving you compassionate leave for your gran’s funeral though. I hope it all goes as well as can be expected. Are the children going?

Don't worry Open. Unfortunately all my plans for the week are in ruins - DS has tested positive for covid. So far no symptoms, 7 of DS's classmates have tested positive for covid since Friday so I tested him.

Now it looks like I won't be able to make it to the funeral any way. If DS tests negative on Thursday and Friday and if DD and I do not get it then I can go. I also have a friend who has just had covid who has offered to look after the children if I stay negative. Worst case my sister has said that she will read my speech and I can watch the service online. I was planning to go to the crem by myself and then collect the kids from nursery and school to go to the wake. I can imagine DS shouting out at the crematorium 'is Gran on fire yet?' - some of my extended family would make us feel uncomfortable.

One thing I would say about the online reading schemes is that the plays can be great. You can choose to read it all or play a part. DS takes on a part and he does some excellent delivery of the lines and his reading comprehension also seems to be better.

Oh no dimples I'm so sorry, what absolutely rotten timing. I do hope you are able to go after all.

For tomorrow:

52 small changes apart from exercise, incorporate regular and routine activity into your lifestyle (also drinking water and sleeping 7-8 hours)
52 small changes for the mind smile every day, as much as possible (also, journaling and listening to music).

I have fallen off the wagon somewhat with this and need to get back on.

Oh no that is rubbish timing @dimples76. Weirdly DD just came down with it this weekend. Lots of symptoms but none of them too severe, and she already seems a lot better today. I think under the new rules she might be able to go back on Thursday but it's all reliant on a pair of negative tests and she was VERY positive on Saturday (almost instant and a very strong line). Will be interested to see if our boosters can stop us from getting it. DS I think will inevitably get it unless he's already had it asymptomatically....

Light & dimples I hope all your children are ok with COVID.

Dimples sorry about your grandmas funeral. I had to miss a family funeral before, I took some flowers afterwards to the crem. Although it wasn't anybody super close to me. Your comment on ds about 'is granny on fire yet' did make me laugh, it is definitely something my own ds would come out with, literal as anything and zero filter I hope you can still go (I'll cross my fingers for you)

Hope everyone else is ok. It's just dawned on me, that in 10 years time ds is going to be 18 and an adult. Seems ages away but then I think how quickly we have got to 8. I get a bit sad at this time of the year sentimental cow that I am (around ds birthday) when he's a year older and I think about how quickly he's growing up. I feel like I've wasted 8 years of his childhood really, stressing and worrying about his disabilities and struggling with his behaviour and its all just passing me by in a blur. I have fond memories of certain things when I was a child growing up, maybe around ds age and I often think about them, it's things like at my grans house and then I think, ds can't do that and go stay with family so he isn't going to experience things / memories like that.

I just don't want ds (if he's able to when he's older) to look back and think god what a miserable moaning cow she was.

Ds has got himself dressed 3 days in a row, morning and night. Well, I have to pass him the clothes the right way round and give him second by second instructions, but I'm refusing to dress him now (being cruel to be kind) he's more than capable. The more he does it the better he'll get. I would love to show you a photo of him this morning after he got his uniform on, good job I'm on hand to straighten him up. His school jumper and polo shirt were like a crop top

Ds said to his teacher at home time, why do I have to go home and the other children are allowed to stay at school

Nice observation there ds!

Apparently his teacher said, I need to ring mummy and speak to her but after February half term we are planning to have you all day and you'll stay for the same hours as your class.

Then he spoke to ds taxi driver and said, they had already planned this but he hadn't spoken to me about it yet, they are splitting the class in to 2, half sensory and half academic after February half term, and ds needs to be half and half so he'll spend the morning in one half and the afternoon in the other half, so he's having his sensory needs met and also his academic needs, so ds will do 6 hours a day when he goes back after half term...

Result ds!

He told ds taxi driver that they have split the class into half depending on their primary need, so those who need the sensory programme are going into that class and those that need the academic programme go to that class.

But for ds he needs sensory, but that he's also really clever (that's what ds teacher said ) so they can't put him into the sensory class alone because his potential for academic wouldn't be reached so after deciding with the headteacher they agreed on doing half and half with ds.

So I'm pleased with that.

Well that's great news danni but a bit ridiculous to tell your 8yo before you!

Light I hope dd is ok and the rest of you manage to escape the virus.

Ds up since 3:15 today hopefully he's down early tonight.

Yay, progress at last Danni although as for their communication the less said the better!

Have any of you appealed the contents of an EHCP (sections B and F). I am really puzzled by LA's response.

Long term lurker but first time poster, I thought it would be a good time to poke my head around the door and say hello.

Firstly, I've read this topic from it's very beginning on an almost daily basis. It's ben a huge comfort as we've followed our own journey through the school system, and on to special school last year. I also often wonder what became of some of the guys from the original (Very first) thread who no longer post... Either way, I feel as though I kind of know all of you to an extent (Weird/unnerving as that undoubtedly sounds!), although I'm sure there are many others who lurk and draw comfort/insight from this topic without actually contributing.

A little about me- DS is 7, and as such we've been pretty much the year behind you through all of this. He's a clever lad, verbal but not to an age appropriate level and almost certainly has co-existent ADHD (Currently battling with CAHMS for diagnosis). We won a place at a special school last year, and after some ups and downs feel as though we made the right decision.

All that being said, I'm actually here as I have a question...

For those of you with children in special school, do any of you receive a transport/travel allowance from the LA rather than using the school bus/taxi service? I ask because we drive our DS to school rather than using the transport service (We think he'd struggle to cope with it at present TBH) and I'm sure I remember someone here mentioning this?

@Dad101 Hi, yes you will receive a mileage allowance, if I think the school is 2 or more miles away from your front door (that's the rule here - and I think roughly the same in all local authority's) you need to contact the transport department of your local council and request it.

Open is the one on the thread who will be doing so for driving her ds to his specialist school.

We were offered (without checking back on my emails, I think it was) 39p a mile for the first 100 miles in a month and 27p a mile anything over 100 miles. (Bcos we all know after you've reached 100 miles you get a discount on your fuel and wear and tear!)

Ds school is 19 miles away so I would of been driving nearly 80 miles total a day. I worked it out wrong when I first calculated it, as I didn't realise they paid for your back home trip and back there trip aswell. I thought they literally paid towards me taking ds and bringing ds home and my own trip home and back there was at my cost, but in actual fact they would pay me the 4 trips a day. You have to submit your miles to the council monthly and they pay you it back.

I'm happier with a taxi for ds though.

Not sure my 12 year old car would last long racking up that much mileage each day and it absolutely drinks petrol! x

Welcome Dad101, thanks for posting. I sometimes wonder if there are people reading but not posting at all. I’m glad it’s been a help to you.

I posted recently that I’ve been given a travel allowance for driving my ds to school. The caseworker said that all dc attending a SS are entitled to travel if they live more than 2-3 miles away. She told me to speak to the transport team when I asked her about an allowance (I have a friend who gets one) but I didn’t need to as they organised it all for me before I had a chance.

Crossed post danni. I didn’t need to submit anything though. It must be cheaper for them than using a taxi.