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

Finally got through to CAMHS and they said that DS won't be assessed until April 2023 at the earliest - aghhhh. I need to find the records from the CAMHS psychologist who said that DS should be fast tracked as there's already an enormous evidence base for a diagnosis.

ridiculous dimples! Ds was on the CAMHS waiting list 17 months, referred age 6 when they accept referrals here for adhd, diagnosed 7.5 years old. I can’t moan about them as such as no real issues, but the pyschiatrists have fucked off here! Which means any new referral is stuck waiting even longer as they can’t prescribe anything until you’ve seen a psychiatrist. Of which they have none! Ds is under the adhd nurse now as he’s an existing patient but anybody just turning 6 getting referred as ds did, that 17 months is now god only knows. It’s awful.

Sorry you have to wait so long.

Had another bad day with school calling, they want to ring me again in the morning when ds isn’t here. I won’t go in to detail about what ds did at school today, I sometimes think nothing ds does would shock me…. I think ds is on super thin ice now. With school. 😫

Terrible to have to wait so long!!

Oh @danni0509 big hugs! Sounds like you're seeing a real calming of behaviour at home though, which sounds nice.
DS up and down today apparently, trying to bite and saying he wants to win the level and take over the planet...I did say not to let him watch zombie stuff!! Argh. At least I'm feeling better about the cat and work went better today. Hopefully got a date night on Sat then only two weeks until half term (we are going to usual camp site for the weekend).
Anyone watching Eurovision 1st semi final tonight??

I haven’t watched Eurovision since Katie price was representing the uk. I was 16 and had not long moved in my first flat with dh, I used to love the results part hoping we’d win! 🤣🤣

I have put 2 euro tickets on for the 185 million tonight. I’ll give you all a million if I win. Can all afford private treatment then!!!

Thank you Danni. Watching Wim Hoff tho always feel like I need to turn up the heating when this is on!!!!!

I won 2 numbers, sorry guys. 😂

It will buy ds his toasted teacakes tomorrow at least.

Pisses me off bcos I spend it in my head.

So close Danni!
Sorry to hear about the school probs.

Susan glad to hear that you're feeling a bit better.

danni I won £2.60!

School sounds ominous, I hope the call goes ok. Great to hear about improvements already from the medication though.

dimples I hope ds can be fast-tracked, another year is such a long time.

Susan I hope you’re doing ok, how has ds been about the cat? carrie is right that work can pick up later.

Meant to say too about the meds Danni that our prescriber was very clear that it wouldn’t touch adhd symptoms for weeks so school are going to have to sit it out im
afraid. Can’t you tell them you don’t have time for regular calls and perhaps you could diarise a bi termly catch up? I do hope my DSs new school don’t want such constant communication it will stress me out no end. In fact when they were playing this game at current school a few months ago I got so stressed I changed DSs primary contact to DH and told school why!

Weirdly re the adhd meds we are on a break and DS is better than ever before, taking nothing! Completely bizarre.

Thanks carrie I had read 6 weeks ish for this new one, so I wasn’t expecting much yet. (He’s been taking it 11 days)

I don’t think them contacting you that often is standard, just ds playing up so they are on my back a bit, they usually email 4 times a week (mon-thurs, usually not on a Friday, I imagine they want to get home) just with an update from their day.

phone calls are more when they are having ‘issues’ so I’m getting plenty of them at the minute!

Hows the juicing? Dieting? Meant to ask for an update.

Ha ha I’m useless Danni! It’s supposed to be 2 days a week. First week lost 9 lbs. Second lost 1lb. Then went away over Easter and have been a bit half hearted with it since. Find it REALLY hard! I could do it but when I’m cooking a nice dinner for the kids and then DH (the latter at about 8pm when he’s home from work) and I’ve not eaten anything since the previous day it’s just so hard! So don’t adjust your minds eye to Amal Clooney just yet …, 😫😫😫😫😫

I am in awe of your even trying the juices @carriebradshawwithlessshoes ,I don't think I could resist the lure of chocolate!!
DS' school tend to contact me via the app that they use if he's had a great day or a tricky one! They put class photos up daily and they have a learning evidence app thing. He's been up and down more lately so they've contacted me more but they are so much more constructive so they're always looking for ways to help him if he's struggling.
We are pottering through, only just over 2 weeks until half term! We're going to our usual camping place for a couple of nights, can't wait, especially as we couldn't go on our mini break at Easter due to covid! It's getting easier without the cat but I just still miss him. DS asking when the kitten is arriving! It's the second Eurovision semi final tonight too so hoping to watch that if DS ever falls asleep!!

Second week running ds school haven’t let him to the park. 😔

Whats annoyed me is they told him last week it was just for last week, then they’ve let him down today by saying they still feel it’s not safe and they have to protect not only him but the other children and other people out in the community, so they have decided they can’t take him ‘for now’ (no mention of when he can go)

So he’s kicking off big time this morning and rightly so. I was thinking to myself kick off a bit more ds and aim your frustration to the people doing it to you. He’s not stupid is this kid, he understands it’s unfair.

He told his taxi this morning, my teacher hates me, she never lets me go to the park, she takes my class and leaves me at the computer, she’s CRUEL to me!

I genuinely did not put those words anywhere near his mouth! I’m careful of what I say in front of him as he’s a total grass 🤣 but thats how much he understands the situation!!!!!!

Taxi said, you need to tell the teacher that, and damn right he does!

His main teacher phoned me again yesterday bore off I told him I don’t agree at all.

He went on trips in his mainstream school, he had 2-1 support, he went on a coach to another town to visit a museum, ds spent the day on the grass with a box of toys they took with them, and sat in the senco’s car who followed the coach in case they had any problems, doesn’t matter they still included him. He went to a gymnastic trip and they prior to the trip went and scoped it out and let the centre know about ds, he again went and had 2-1 support and managed the day. I told his teacher this and he said, but we have 10 children each with their own needs and 1 kicks off they all do. (Wtf as if that justifies it)

My mum has told my sister in law about it, she is a year 2 teacher, she discussed it with her head and senco and they are horrified, my sister in law text me last night and said his school are breaking the law and her school head was furious on our behalf.

In a mainstream school I think it would be bad enough, but more understandable since they are not appropriately trained etc etc.

In a specialist school I don’t think there is a good enough reason to actively discriminate against an 8 year old like that.

Thing is I’ve voiced my opinion both weeks and they still don’t give a flying fuck.

open hows school been going?

danni, any chance you could go? I know you just have DHs car now but could you have the car for the day/ go with DS in his taxi and then come back with him if needs be (hang around the area)/ get a lift to school with a family member? I know it’s a pain but they would have no argument then .

Or bus/ public transport? I know you shouldn’t have to of course but just thinking around it..,,

you could probably show them a thing or 2 about parenting and managing DS whilst you were there?!!!!! It would be hilarious if he was good as gold when you were there (bribe him beforehand!), that would be a 2 fingers up at them!!! Worth it for that!!!! 🤣🤣

There was no mention of that being an option carrie and if it had been local, say his old school, I wouldn’t mind so much, but even they didn’t expect that, but I’m definitely not doing it 20 miles away. At a specialist school.

It’s 35 mins each way. What a ballache. Only to allow ds to do something he should be doing anyway.

I do have a good mind to offer though, see if they take me up on it, but only to embarrass them and show them this is how you manage ds, what a bunch of goons! 😂

Being serious though, I have to be careful, do something once that’s it forever where ds is concerned. So he’d expect me at the school every day! I definitely don’t want that as part of his routine.

I take him to our park locally to compensate, (I take him their anyway, but an extra trip when he’s been robbed at school) but I don’t see why I should have too.

There was several reasons I moved him to a specialist school, and they are literally living up to none of my expectations. How depressing x

Well done on the weight loss, 9lb is fucking incredible in 1 week 🤣 it took me 8 weeks I think to lose that!

Im slowly plodding along. I’ve lost 13.5lb now (Since February, I’m not over the moon how slow it is) but it’s better off than on, and I accumulated this extra fat over the last 2 ish years so it’s not going to go overnight, that’s what I keep telling myself.

Well done on your weight loss Danni and Carrie. I can't even bring myself to get on the scales - all of my clothes are too tight. I started doing 16:8 and reduced carb on Monday. Hopefully I can stick to this.

So rubbish about the park trips Danni

Well done on the weight loss danni & carrie.

danni sorry ds is being left out of the park trips.

We've had a pretty good week. Ds is staying at school for varying lengths of time, and I'm not keeping a written record which I probably should but he's been staying up to two hours which is not bad given where we were.

I phoned up for a DLA form so have to fill that in now. It's been on my list for years...

Open I would really recommend the Cerebra DLA guide when the forms arrive - I think sometimes we get so used to our normal that we don't register all the extra things/adjustments we make.

We have been at my niece's swimming party today. She and her twin brother are both autistic they have both really enjoyed their birthday parties this year and have really come on socially. It seems a long time ago now that my sister and I sat at their nursery 'graduation' with tears in our eyes as they played 'You've got a friend in me' accompanied by pics of the children with their pals (the twins had no friends).

Yes deffo apply for DLA open, useful for additional things for ds, with his frequent night wakings and needing attention during the day and night, he deff should qualify for HRC in my opinion, ‘night’ is anything before 5am so I believe…, which your ds is a master at! I’m sure you’ll have no issues, you know what you’re doing.

dimples I’m pleased you & kids enjoyed your nieces party.

My sister has had an appointment for my nephew, he was already under the neurologist for something to do with his eyes and them thinking it was related to his brain. The neurologist said he does present as having severe autism and that will likely be his diagnosis. He’s only 13 months bless him. My sister showed me the report that came yesterday. Quite depressing to read about a baby. He has some cdc sessions booked for may and Portage has started and it’s the same worker ds had 5 years ago, She mentioned ds to her and she remembered ds straight away. Portage said nephew is developmentally at a 3 month old level.

She also filled out my nephews DLA forms for her, my sister didn’t want to apply but they don’t have much money and honestly he has that much going on I think he qualifies, portage said she absolutely must apply so I’m pleased she did that for her.

He has to have a general anaesthetic for something related to one of his other conditions and they are doing an mri on him at the same time.

Fortunately for ds, (well not fortunately but you know what I mean) he only has autism and adhd, but other than that he’s perfectly well. No actual health conditions. My nephew has problems with his eyes, skin, muscle tone etc, he has to take quite a lot of medication too, plus he is tube fed.

Sometimes I think we are lucky!

That sounds very tough for your sister Danni but it sounds like there is early intervention. I still miss DS's portage worker. She was the one who told me to apply for DLA - I was really taken aback, at that point DS was having lots of tests and surgeries as well as GDD but I was a bit in denial. It helps me hugely as it meant I could reduce my working hours. DS gets middle rate care (no night time care needed- at the moment) and lower mobility.

Susan you must be thrilled with last night’s result. I wonder why we’re popular all of a sudden?

Thanks for the advice on the Cerebra guide, it’s on my radar.

We had a doozy of a night. Two minutes after we turned our light out Ds woke up with a blocked nose (which you may remember he hates). 90 minutes of fussing and whinging from him (by which I really mean shouting, screeching and generally being pissed off) before he went back to sleep in our bed. Lots of sniping at each other by me and dh. Then he woke again at 3:30 and wouldn’t go back to sleep. This time it seems he does actually have a cold as he has a runny nose. Going to speak to a pharmacist later to see if they can recommend anything.

danni your poor sister, what a lot for her to take in. I hope with a bit of time and support her ds’ situation improves.