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

Oh god yeah open loads cheaper to pay travel allowances!

Ds PA is on £10 an hour, she is paid for 2 hours a day. And ds taxi worked it out she is paid £62 a day! I asked them and they told me.

£410 a week in total for taking ds to school, 39 weeks a year. Just worked out that's 16 grand a year for his taxi and PA. 😳

They wanted ds taxi to collect another child (taxi share) which is fair enough and it makes sense to share the costs, but the driver said no, she said ds won't cope with anyone else in the taxi. He doesn't cope with a change in PA. So the council said ok and didn't ask the taxi company again.

I'd take ds to school for 16 grand a year. I'd walk him if it meant they'd pay me that 🤣

Hi @Dad101! I have nothing to add on transport but just wanted to say welcome to the thread and glad it has been useful!

How are you all doing @dimples76? DD seemed much better today and managed some activities her teacher sent. I'm really hoping she can go back on Thursday as I'm still getting really behind on work, but her line was so strong on Saturday that I'm kind of doubting she can be no line at all by then. Anyway, we'll see. I know people who were still testing positive at 10 days despite not having a strong line to begin with, so just hoping we're not one of those (and the rest of us don't get it!)

Hi Dad101 and welcome, glad that it has helped reading.

Light DS had a high temp this morning and although it came down with calpol he complained of feeling cold all day. He also had a v quick v bold positive line appear on Sunday. I'm still testing negative but DS has both coughed and sneezed on me... We didn't do any school work today as DS was too poorly this morning. I think that we'll just aim low tomorrow with some reading and times table practice. I worry that DD might be coming down with it too as she was rather tricky today but maybe that's being 2 and getting jealous of the attention her brother is getting and her Mum trying to do some work. She got out the toy laptop earlier, told me she had work to do, bashed a few keys, closed it, said all done then eyed me reproachfully as if I needed to follow her example of efficient working. The 3 of us played with DS's train set for quite a while with no squabbling so that was our win today.

Danni wow, that's so much for the taxi

The trainset is definitely a win when you've got one poorly, one playing up and you trying to work!!

DS tested positive this morning but seems completely asymptomatic. I'm about to get them both to make some 3D shapes out of straws and blu-tak which DD's class are apparently working on today - but that's a good reception activity too, right? Anyway, it will have to do.

DS will have to be off all week regardless of whether DD goes back, so work-week is officially screwed....

Oh no Light! I hope it’s not too stressful a week for you.

dimples I hope dd is ok.

danni that is a lot of money. I don’t think my allowance is as generous as yours would have been but it’s nice to get something, I’m driving him regardless.

Hello Dad101, welcome!

Hope all Covid patients aren’t too poorly and mums are coping!! Dimples that’s hilarious! DD said once if my work phone rang not to worry, she would just answer and tell whoever it was I was busy and to call back. If only!!!!

Fairly rubbish time here. The speech unit we had so wanted for DS has rejected his application. The head at that school couldn’t believe it, said she had no idea why and was asking the LA (it’s the next county, We are on the border.) We have been emailing each other weekly and she had said how DS would be such a good fit, how his EHCP reflected exactly what they cater for and how they had loads of space. So wtf?? Trying to find out the reason and suppose we have to appeal but why is everything so hard??

The Local v good SS as I said has offered a place for Sep but just really wanted to explore the unit first. I’m just exhausted with it all. Spoke with the head of the unit yesterday and she said I can’t give up but it’s so draining, all this fighting for something that we both know would potentially be a game changer for DS… if not then yes, as Open said the SS sounds great but I just wanted to see if this is an option.

Qu… what is adding to the stress is that I absolutely cannot contact DSs case worker AT ALL!!! Has anyone had this? So I ring him and he doesn’t pick up. I leave voicemails, as does DH, no response. I don’t even mean that day or even that week I mean he just doesn’t respond. Last time I think it was a month/ 6 weeks after DH mailed him and said he wanted the name of his boss. Yesterday we needed to discuss the units rejection, couldn’t get hold of him. We can’t wait another month…. Is this normal?? What would you do? I’ve literally emailed everyone I have ever had any dealings with at the LA, not a peep back. It’s really stressing me out…

I said to DH I feel like going over there, DH said no point they will be wfh.

AIBU?! Help!

Dimples, re DSs appointment I know I’ve said before but try and record the absences if you can, esp as you have a bit more time now. It’s really important especially if they can’t induce an absence with the blowing exercise. They may recommend a low epilim dose… it comes in a liquid but worth asking about epilim chronosphere if they don’t mention, which is what DS has and is slow release. It comes as granules in little sachets and is slow release for longer protection. I wouldn’t be surprised if it stops the absences immediately.

Woo hoo @danni0509 on DS' hours!
Welcome @Dad101!
Sorry to everyone feeling poorly etc.
@carriebradshawwithlessshoes yes we had the same thing with our case worker and I think it might be fairly standard practice!! I would just email case worker with main general email and head of dept all copied in. Our senco gave us some names of higher up people. Also our case worker left and no one told us, then came back and no one mentioned it ha. And a different person deals with appeals so what does that tell you!
Yes, appeal!! Its hard but not that hard and with your legal background you're probably already used to a lot of the processes etc. Keep all your unanswered emails etc. If your LA mess about at the sendist appeal court and delay deadlines etc, the sendist people pull them straight up on it. I found they were very fair to parents,prob because they've seen all the tricks LAS play! Remember, the case worker is never fully on your side, their job is to look at cheapest options etc.
We are pootling along. DS went swimming with school for the first time yesterday which apparently went well. Still waiting for agents re childrens book. Not giving up but all a bit much. Dry Jan going well apart from weekends!! Looking forward to Easter now and trying to book a break away somewhere. Thinking about Northumberland if anyone has any tips?

carrie are you saying the school with the unit said yes but the LA/panel have said no?

Just looked at the letter re. my travel allowance and it’s calculated at 40p per mile but doesn’t include my return trips given the total value. The school is 10 miles drive from here.

Magrat well done to your ds and to you for dry January.

Absolutely Open. The head of unit said she even re read DSs EHCP when she got the written refusal to see what she had missed and there was nothing.

She said it could be an issue of banding whatever that means ??

Banding is to do with money I think, though I would have thought this is a cheaper option for them than SS which is generally more expensive?

Has the caseworker offered you the SS in September?

Yes banding is to do with money, the local authority determine what band your child goes in, it's usually looked at at every annual review. Obviously as children's needs change / grow.

Specialist type schools have certain criteria (to make sure the child is bringing in the correct funding for their place) if your ds isn't on the right level, say he's a band 3 but the unit is a band 4 and above then some negotiating will need to be done or ds will not be gaining the unit the required funds for his place.

You need to get hold of the send department, one way or another. (They are all like this with their phones!!!)

Do you have a direct dial for their landline / main line? so not the case worker direct but the main office. Keep phoning that. But yes not a bad idea to go in but yes WFH (that's why they aren't answering their phones. Out walking the dogs instead of doing any work!!)

How bloody boring carrie

Sorry I got cut off.

Yes he has been offered the place at the SS for Sep. Spoke with the head of the SS school who was lovely and has said I can look round in feb which I will do. It is a fabulous offer but I was always keen if I could to try and explore a unit first, which I thought I may be able to try as the head of the unit seemed so confident he could have a place there pretty immediately. If that had succeeded then the sep place at the SS wouldn’t have been needed. I know that’s complex but I was trying to engineer that…! The SS are not pushing for an answer and I assume they can’t withdraw their offer??? Given that they suggested looking round in feb suggests they don’t need a quick response. So that’s how that was left.

Re banding I assume his funding is a band… so let’s say the highest banding is A for more serious needs, are they saying that the funding for the unit is I don’t know, 18 kids all in a C band and DS is maybe D band so they wouldn’t get enough money or perhaps B band which indicates his needs are too severe? I don’t know, maybe I made that up??!! 😫😫. Been ringing LA again cannot even get through to a human, no response to emails, I’m livid.

Just really disappointed as I have a direct line of communication open with the head of the Unit and she was amazed at the response. But it’s not her decision I suppose. We also sit on a country border, I can stand on my driveway with one foot in one county and the other in the next it’s that close.. the unit is 5 mins down the road but technically the next county, could they have given priority to those in the county?

I know as Magrat says you have to appeal and so on but what’s doing my head in is I can’t get through to any bugger to discuss and move forward with that.

Sorry Danni we crossed

Many thanks for the warm welcome everyone- Although if I'm honest my input here is likely to be limited. I had a burning question and was pretty sure you lot would be the best people to help. Thank you so much for the swift responses @danni0509 and @openupmyeagereyes, that's just what I needed to know.

For what it's worth I always feel (Rightly or wrongly) that there's something 'out of sorts' with men posting on Mumsnet. Essentially I landed here as it seemed a useful source of information and a bit of a lifeline whilst battling through the technicalities of advocating for a child with additional needs rather than for any nefarious reasons!

Either way, this is a fantastic thread and it's nice to have touched bases.

All genders and none very welcome here @Dad101 - but also feel free to drop in and out of course!!

Dad101 ditto what Light said.

DD has been up most of the night with a croup cough. I have woken up with a sore throat. I have not tested us yet as I just wanted to pretend to myself that I might still be able to be at the funeral.

Oh no dimples, I'm so sorry. Thank goodness for Zoom, though I know it won't be the same

We just had a very unexpected visit from ds' teacher. I knew he was going to arrange to come but we hadn't heard when. Ds was out in the garden on his trampoline in his pj's. Thankfully I was dressed!

Dad101 you're welcome any time. I think it's very refreshing to get the male perspective.

No idea what's happened here but this thread is not showing on my threads I'm on. So missed anything posted since yesterday.

Anyway I'm back, you don't get rid of me that easily 😂

@Dad101 honestly 'mums' net or not, you're more than welcome to post as much or as little as you want, we are all in the same boat after all.

Open how did it go? Least you weren't shouting or anything when he unexpectedly arrived though! Always a positive how was ds with him?

Dimples I'm so sorry if you have been unlucky to catch it too. Let us know x

Hi to everyone else.

I've had ds CAMHS appointment this afternoon. He see a different dr today, we haven't seen him before, he was surprised at ds behaviour during the appointment (ds wasn't even being that bad tbh just his usual turning the room upside down and climbing on furniture and drawing on the wall etc that's just ds, although stressful it's nothing out of the ordinary) so he's increased his medication even after I'd said he'd been getting on more positively at school he still wanted to increase it, he said he shouldn't still be doing this (behaviour he was displaying) on adhd meds and that he should have a little more impulse control. So he's doubled the dose. Which to be fair ds wasn't on a strong enough dose for severe adhd anyway. I knew it was going to go up id spoken to the other dr about it before.

He wants to keep him on this increased dose for 3 months and then try him on a different one, next time they want to try slow release again but 40mg instead of 20mg like last time. (He was awful on the slow release last time but the dr said that's because 20mg wasn't enough.)

Interesting @danni0509 glad you got q different perspective from other dic, sounds really helpful.
Ha, thank goodness you were dressed @openupmyeagereyes, I bet I wouldn't be if u wasn't expecting someone!

danni when is he starting the higher dose? How do you feel about that?

Ds was a bit shy and silly. He was crashing about the trampoline and didn’t say a lot. If they were in the house he probably wouldn’t have been in the room for most of it.

Magrat if he had turned up yesterday I wouldn’t have been. I didn’t sleep very well (not ds’ fault) and as we don’t have school there was no rush to get ready!

Sounds like an interesting appointment @danni0509. How are the side effects - are you still finding he's tricky at home on the meds? Maybe a higher dose may even help with that, but I guess it's just an unknown at the moment. Not sure what I'm really saying except I hope it goes well!

We're all fine here. DD still has quite a strong line so I don't think she'll be back in school this week - hopefully Monday. I've just tested positive too though, so if OH follows suit there may be nobody left to take them in by Monday!