Primary school auties thread 9 - spring / summer 2022.

[danni0509]

Thread 9.

Links to previous threads below.

For the parents / carers of children with additional needs, most of us have asd / adhd children in primary school, but anybody is welcome to join us to chat x

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

Yeah I totally have a crush on Steve open! Well done on the DLA. I gave up on the carers allowance form Because I was working freelance and it was too hard to work out. If you're not working it's not that bad.

I get that crush too dimples!

Well done open. At least all done, sounds like you have done a great job,

Well I’m not sure if the hard work is done yet or not. I still need to write it all on the form and only a couple of days to do it! My notes are all question by question but I need to pull out the salient points as there’s not much space.

Off into town today for a couple of hours. Really looking forward to it.

Fortunately I have had chicken pox. DS has been exposed to chicken pox many times before without catching it. I am kicking myself now as earlier in the year I was looking into getting him vaccinated but never got around to sorting it out. As you say better to get it out of the way but as ever the timing is lousy - DS's bday on Tuesday, EHCP Tribunal hearing on Wednesday and emergency meeting at work on Thursday. DS is raging as I had promised to take them swimming today and in his opinion DD is well enough to go! It's going to be a fun week!

Oh no dimples, I hope dd is not badly affected and ds doesn't also get it. Ds had it very mildly in reception year and only a few spots, thankfully.

I hope you can get all your meetings done and that ds can still enjoy his birthday.

Hi all.

Tricky weekend here, sorry not posted.

ds had a very good week at school last week, not so great yesterday and today at home. He’s drained me today. He’s had a really anxious weekend and has bit big chunks out of his lip and now has ulcers all over his bottom lip. He’s just gone to sleep now.

open carers allowance I applied online, I think. It was years ago now. It took 5 months for my money to come through, they backpayed it all, with that and ds DLA we got over 2k in back payments. Plus we claimed tax credits then so got additional from that too. I don’t remember the form being very long. I worked (1 x 12 hour shift a week) when I first claimed carers and had to send them all my wage slips, they wanted loads! you can only earn a certain amount, think it’s £128 a week or something now. They know how to treat a carer! 🙄

Ds hasn’t had chicken pox yet either bizarrely. In reception they had an outbreak and ds never caught it.

when he was a baby / toddler, though, he caught hand foot and mouth 3 times!

Send help! Dh went to London this morning for a couple of nights for work. This is the first time since before the pandemic and ds is not handling it well. He's refused to go to school, tells me he's not going to any school ever again. He packed a case to go to London and see daddy. I was planning to take him to Tesco after school and he's been tantrumming because I said he couldn't get a toy so we won't be able to go at all now.

It's going to be a long few days...

Open!!! 😬😬. Are you commutable to London? I’d be tempted to sack school off for a couple of days and jump on a tube (or is DS intent on seeing Daddy??). What’s he up to at lunch time? 🤣🤣. Maybe leave the case tho…

I do take education seriously really….which is why I’m just completing my 2 week absentee form at the moment to go away in July.

being serious I would just do what is easier for you until he’s back.

Taking ds to London is definitely not the easiest option!

I personally do not find London an easy option full stop… I’m that annoying tourist who can’t work out the tube stop or where to put the ticket to get beyond the barrier! I have a London friend who has pretty much disowned me when I’m down there. 🤣

I commuted to London for nearly 15 years before ds was born, so I’m fine by myself. I think we may try and take ds there soon but would have to limit it to a couple of things, not a mega day out.

We are going to Turkey very soon. And honestly I’m regretting it so much! This was booked in 2019, for 2020, but of course covid moved it twice! Ds in 2019 was a lot different to now, he’s so much harder to deal with for similar but different reasons if that makes sense. So I’m DREADING it. He’s looking forward to going in the pool, so he says, but we will see. He’s like a vampire nowadays, hates the sun, hates the wind, the sea, the air, the EVERYTHING 🤣

He was hard work on holiday at age 4/5, so I am just really worrying about this week away.

I sent the holiday form back to school couple of weeks ago, they haven’t replied, I dare them to fine me when ds only does 4 hours a day. Cheeky bastards. I’ll have something major to say if we get fined by the LA. It’s not the fine that bothers me, it’s the principle! Education is important when it’s on their terms, but fuck it when ds has been on reduced hours for 4 years in a row!! My friend said the LA send a really patronising letter with the fine about how important it is for children to attend school bla bla bla, it will be reading that letter that will have me on the front page of the daily mail for arson!!! 😂 How fucking dare they? Ds attendance was 62% last annual review because of all the part time hours.

Ds takes liquid medications so I’m trying to find out if both are ok in my bag, I can’t put them in suitcase in case they go missing or explode (which happens to my shampoo / body wash often) tui said it ‘should’ be ok, but get a drs certificate, my dr doesn’t do them, so I’m unsuccessfully trying to get hold of CAMHS to see what they can do. Turkey apparently have a banned list of medications that can get you sent to prison even with a prescription should you take them, I can’t find the list. So Turkish jail is probably incoming.

Then my annual travel insurance I binned off since covid stopped us going for 2 and a half years, so I’ve had to purchase travel insurance and declare ds conditions, obviously I always do because the one time I didn’t we would need some kind of medical treatment! Anyway that’s annoyed me, how much more they charge for having ‘conditions’

Im such a miserable bitch. 😂

Good luck with it all @danni0509 ! Our flights to northern Spain have been cancelled so.looking at UK now but everything is so expensive!!
Sorry I've been a bit quiet...we got a kitten yesterday!

Carrie how do you usually take ds medications? Do you get a letter? X

They havent been liquid Danni. The first one that is is the alimemazine that he’s taking now. I hadn’t thought about that but he only takes 1 mg per day do I only need 7mg which I can hide in something if needs be, isn’t there a limit?

I have travelled in the past with liquid penicillin when DD had scarlet fever and yes I got a letter from Gp.

oh no Susan when were you going??????

Well, yesterday ds ate a bit of strawberry from the garden. Today he had some Mr Whippy ice cream and even ate some of the flake and cone. I am quite gobsmacked as this is huge for him. I'm trying not to get too excited as he has tried a (very) few things over the years and they have never made it into his list of accepted foods for more than a week. Today I am very pleased though. A good day!

He did go to school but only for half an hour and wouldn't join his class. Sigh.

I am almost done with the DLA form. I feel a bit disloyal to him and hope that he never, ever sees this document.

Great news on him eating something new!

Ds is also extremely fussy, well it’s not really ‘fussy’, his school said it’s called AFRID. Restricted food intake. He was supposed to see a dietician but that never materialised, and really they only prescribe calorie shakes and weigh them regularly, so I haven’t pursued it.

Ds lately is just living off bits of pasta and toast and only eats his chocolate biscuit bar and satsuma at school.

He can eat loads some days, but it’s always the same safe foods, he never eats meat of any kind (apart from when he had a few weeks of eating bolonase) so I worry about anemia, but what can you do.

It’s annoying though, I have to take pack lunch out that consists of go ahead bars and breadsticks, if we go anywhere, as I know he won’t eat anything I buy. It is definetly restrictive.

I remember a time when he ate popcorn chicken from kfc, chips from McDonald’s and a cookie from subway, I’d do a loop and collect each item so that was his meal. Pain in the arse 🤣

CAMHS have done me my letter for ds medication for holiday, she phoned earlier and to save me picking it up she’s posted it first class today. So that was very helpful of them. And very speedy!

Oh, ds 100% has AFRID too. Not diagnosed but worse than their criteria. We saw a dietician for a while and it wasn't much use, she just gave me info I could have read in a book or online. She did say that there was often a window of opportunity when they are older (than he was then) to reason with them more about their diet and work on adding in new things. Today he doesn't want a strawberry near him again

I'm glad you're having such a good experience with CAMHS, you usually only hear negative things about them.

Well done to your DS for trying some new foods @openupmyeagereyes ,my DS is also very restricted in what he eats.
Well done on your letter @danni0509 ,what a relief!
@carriebradshawwithlessshoes we were going in August so now trying to book something UK but DS, DH and I can't agree where. Meanwhile, all prices going up etc. Thinking Northumberland but that's not adventurous for DH apparently, whatever that means. Also arguing with SH about what to name the kitten who I am apparently now doing all litter tray duties for...harrumph! Got accepted for an amazing MA that I applied for but turned it down as its so much money, so overall feeling a bit thwumped out. Argh.
Ran a bath that DS apparently doesn't want as he is now helping DH buy train tickets apparently. Might just give up and have a wine in the garden 🤣

DH, not SH!

Open your application is drafted for a very specific purpose, not as a general review of DS so don’t feel disloyal. We all in these circumstances say what we need to say… tell the truth, yes, but frame things in the way they have to be framed. If we don’t fight our corner to get the end result we want no one else will. I hope you get a positive result as it’s warranted.

DS eats everything I often wonder if he’s not fussy enough. In Devon we went to a fish market, I bought fresh crab claws and prawns (still in shells with heads on.) DH who is a total fuss pot was going green and went off to get a sausage roll whilst DD, DS and I sat at an outdoor table and ate the lot.. But is that normal for a 6 year old,? I’m not sure. I think he craves taste, spices, textures in his mouth so much really I can give him anything and he would eat it. Tonight he watched me make a chicken risotto and ate that.

Danni, iron is in lots of non meat stuff but you could give an iron drop if really worried?

day 2 of the transitions at school tmrw. Wish me luck!!!!

tell us more about the kitten Susan! I love animals but am petrified of cats, had a bad experience when younger but really totally unfounded. The weird thing is they know I’m terrified. In a hundred people they would pick me out and sit on my knee. All the people saying come here would be ignored!!! They just know!!! Very clever animals.

was it a package Susan or flight? Can you book another flight/ abroad hol? I hadn’t heard of much being cancelled for aug. We have a jet 2 package booked, if they cancelled I suppose i would have to book another for the same date assuming that could be done.

DS packed up and at Kings Cross yet Ooen??? 🤣🤣

Susan can recommend South Devon for watersports, walks, some city stuff too if that’s your bag. Weather always far better in the South!!

Susan sorry about the MA, what a shame.

carrie thank you. Ds has been fine since yesterday morning, thank goodness. He was up at 3:38 this morning though so I’ll be glad for a lie-in on Thursday after dh is back tomorrow 😴