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

That's what I think Open. However, I think that I need:

• School to say they can't meet his needs: or

• Ed Psych to say that he needs special school/smaller class size

At the moment I do not have either. Did any of you manage to move your child to SS without at least one of the above.

No I didn’t dimples, at least school did not say that to us. His refusal showed his inability to cope though.

Sorry, to clarify: we had neither of those.

I guess that the school refusal is evidence that the needs are not being met. Perhaps I could ask DS's teacher if she could estimate what percentage of classes he is unable to participate in. I have spoken to SENCO and I think she is supportive of my plan to try and move him before upper juniors so perhaps it might not be impossible... finding anywhere with space though feels like mission impossible.

Do you need either of those? I thought it was the parents sole right to decide which school type their child should attend provided of course the child has an EHCP if the parent is wanting the child to attend a SS? I’m sure DSs school would say they can’t meet need but I didn’t even tell them I was looking around/ applying. I’m fact the senco rang me the other day and said in a probably mock shocked tone ‘DSs agreed revised EHCP has landed with us today and it names x school as school of choice? Is that right?’. I just said yes and nearly bit my tongue off trying not to say more.

I also think if there is behaviour at home which a parent thinks results from masking at school AND the child has an EHCP, however much school say they are meeting need there’s a fairly clear case for a move?

its weird isn’t it, possibly different geographic locations but in our area I visited 5 general SSs dimples, all within a 30 min drive. All very different. Are there others? There are none in our area that are asd specific schools.

Hi guys, sorry I've dropped out a bit. My cat is really poorly and DH has been away with work so pretty full on. Had a nice Easter but then back to normality etc.
@dimples76 our Ms school never said actually couldn't meet need but reduced timetable and threat of exclusion were evidence. Our LA specialist teacher observed in school and recommended specialist school. LA still tried to argue Ms was fine. We won appeal. His school now is a special school, general not asd specific, and it has a wide range of needs within its stude t population ranging from tube fed and severe learning disabilities to more aspie students who nevertheless need a lot of support to manage their emotions etc (like DS). At his AR, the head did say his maths is phenomenal for his age so, if its still appropriate and he's still at the school for gcses, they would put him in for the higher tier papers although it's not something they usually do. I honestly think specialist schools are amazing because they support the whole person and all their needs and, although his school traditionally lean to less academically able students, they have a big focus on emotions and they'll still support him academically as they are giving him level appropriate work. They also manage demands on him in a way that a Ms school never would. This week he's been a bit tricky sometimes and they're immediately looking at what they can do to pinpoint why and help him, not just moaning on like his old school!
Sorry if I've missed anyone else's news. Meds review sounds great @danni0509 and congrats on DS going into school @openupmyeagereyes. There's no magic solution for our kids I don't think, just time and support and patience.
Anyway, have a good Bank hol all!

carrie I suppose it depends on area but SS places are usually limited and expensive, so in practice it’s not just a parents decision, even if it should be in theory. In your case you have had an ongoing dialogue with the school and LA about the school not meeting his needs which is probably evidence enough. Plus he is non-verbal. It’s great it’s been named in the EHCP, does he start Sept or sooner?

Dimples we had the school saying they could no longer meet his needs. I
would have thought SENCO support could help you. It's so much harder when kids appear to be functioning ok in mainstream. Like you say having an accurate idea about how much time he is actually in class will definitely help. When's his next annual review?

Carrie there's a right to keep your child in mainstream but no specific right to a place in a special school.

Sorry about your cat Susan.

Open how did school go today?

liv messing around when we got there. He ran off upstairs which he likes to do and had me chasing round after him. At that point I was cross so when I got hold of him I frog marched him to the classroom which he was not happy about. He ran off outside (they have a door that opens onto the playground) and I left them to deal with him at the TA's suggestion. He stayed about two hours which is pretty good for him at the moment. Possibly we're making some progress again though I won't hold my breath!

Susan sorry about the cat. Such a shame.

Open we are trying for asap but looking unlikely so Sep.

sorry about your cat too Susan

I do like your posts about DSs school Susan. If we can get half that for DS I would be so grateful. The school Ds will go to Sounds v similar in terms of make up etc

I would have done the same open! Great that he managed 2 hours though.

Well done Open.

Sorry to hear about the cat Susan.
The school sounds great Susan that was the impression that I had yesterday - that everything was really individualised. But the HT said she was having to say no to a lot of prospective pupils because there are no spaces.
Liv the annual review was meant to be this month but because the appeal about last year's review is still pending (hearing originally scheduled for March but postponed until June) the LA said we should wait. I don't think that is entirely lawful but works in my favour given the difficulties visiting Schools, delay in Ed Psych assessment and still waiting on SCAT team. It is now pencilled in for September so I am hoping that we have more ducks in a row before then..

I picked ds new medication up after school, strattera liquid, it costs the nhs £85 a bottle! (I don’t pay! Thank god!) he starts it in the morning. (I hope he takes it!)

It’s based on weight, he was 27.5kg today, so he’s on 12mg a day, so 3ml of liquid per morning. (4mg in each ml) we have to go back in 4 weeks to weigh him again and see how he’s getting on and it will increase to 20mg a day at this appointment, then appointment in June i think he said he will be on the full dose.

This one is determined by weight not severity of symptoms, something to do with how it metabolises in the liver so he needs to be weighed regularly and increased as and when required.

Ds got weighed fine, still won’t have his blood pressure taken, I seem to have it done every time I go to CAMHS! they do it on me to tempt ds but he will not come anywhere near it, anyway thankfully they are patient and just say try again next time.

they gave him a book about adhd to take home, we read it tonight after his bath, it has pictures of bumble bees inside a child’s brain (like thoughts buzzing around) well that was it at bedtime, he read it and thought his brain was going to get stung! How literal he is.

Ds school use a new system, they update it regularly, today they put a load of observations on with regards to targets in his ehcp (he seems to be meeting most of them, they are dead basic though like follow a 2 step instruction or participate in an activity of the teachers choosing for 3 minutes or more) they put pictures of activities on they have done and evidence of which ehcp target it is for and if they are meeting it etc, but they fucked up and instead of just adding ds’ they have put every child in ds group (5 kids!) ehcp targets with their names, on my app !!!!!! 😬😬 I can literally go through 5 children’s ehcp targets right now if I want to look!

Ds class went to the park today, ds went! I was ready to proper complain if he got left out, I got an email earlier this week with details of it, but they rang me yesterday to check how he was with walking, (park is a 10 minute walk from school) I said as long as you keep hold of his hand tightly near roads and keep reminding him he has to listen if he wants to play at the park or he has to go straight back to school and miss out, he should be fine, she said every child had a member of staff with them and they will be closely supervised. Anyway he was really good, held hands all the way there and back, played for 1 hour with the other children and they had no issues when leaving.

Ds said to me, x and x went in pushchairs and the teachers had to push them (obviously special needs pushchairs), he said I told them to get out of the pushchair and walk as they aren’t babies. So I had to explain to ds why sometimes they might have to go in a pushchair when older, legs get tired easier, safer if they are strapped in etc etc, and just because they are 8 it doesn’t mean they can’t use pushchairs if they need to use them,

so now he’s said next week when they go again his legs are not going to be working and he needs pushing in one, he said if they don’t have one for me I’ll share and sit on x knee! 🤣

Ds swallowed half, spat the other half in his smoothie. I just mixed it round and he reluctantly drank the rest in his drink.

He said it’s disgusting, it’s made his mouth horrible etc etc (it’s supposed to be really bitter, of course I can’t taste it to check like I could calpol or whatever)

you’re not supposed to mix it, it categorically states do not mix with anything as it affects the preparation and they may not get maximum benefit. (But he can have the syringe of it, then wash it down straight away with a drink?) 🤣🤦🏻‍♀️

Ill keep trying in the syringe, but it wasn’t a total write off to be fair to him, I told him we will try again tomorrow and he accepted that. I said even if it doesn’t taste very nice as soon as it’s swallowed he can wash the taste away with a drink.

Anyone have any plans for this weekend? Nothing much planned here, will get out for a walk with him but other than that I’m not sure.

danni how long before you can expect to see results?

It’s 6-8 weeks open and not for 3 months until we can expect optimal results.Thats the only thing!

I’ll have to just manage at home, but I’m much more lenient than school with taking ds shit, so I’m not anticipating any good reports from school for a while. And I’m expecting complaints….but they’ll just have to get on with it, and no before they think about it I’m not further reducing his hours! 😅

When I emailed them on Thursday to say they’ve stopped methylphenidate as it’s aggravating his anxiety, and not to give him any more at school, his teacher, who usually takes a week to reply or ignores me altogether, replied back the same day, how is his adhd being supported? And what will the new one do to help etc.

What did they honestly expect me to do, keep him on something that was ruining his and our home life? And causing him to not eat and sleep even worse than he did. No chance!

It’s the lesser of 2 evils. Methylphenidate caused more problems than it solved so get in the bin!

What’s become apparent is, since I’ve taken him off methylphenidate, he’s eating loads (same stuff, just constantly hungry) he’s had 2 bowls of blueberry wheats this morning, a pan au chocolate, some grapes and a yogurt! All before lunch. Thats more than he’d eat all day previously.

That's good that he's got his appetite back Danni. Fingers crossed for the new meds

We are playing in the garden now and have bouncy castle up. DS's screen time has been reduced by about half this week and it's been good for us all. Only thing is it's v tiring for me as screens are the only things DS will play with independently. So far today we have made some cards and cakes, done some 'gardening' and attempted to tidy up together. Is it bed time soon? We are about to visit my sister and family in their new home with cards and cake so that will remove any temptation for a while...

At least you’ve got started, fingers crossed. Good that his appetite is back anyway.

Ds point blank refused to go anywhere near his medication, had a horrible kick off. Woke my neighbours up with his performance, Dh was putting something in the car and next door came outside and mentioned ds (god he’s happy early on a Sunday morning!) he can fuck off anyway his kids are naughty and they are normal!

I tried to coax him to take it from 7am, not a chance was he putting that syringe near his mouth. Just dramatic screaming and slamming doors etc.

I eventually just said do you want it in your smoothie? He said yes, so I’ve done it in the drink. He uses a straw to suck every last drop out of the cup. So he took the full dose like that and seems fine to drink it that way.

Not having that performance everyday with the syringe, do you think it will be ok? They say strictly not. But what else can I do.

The old stuff it said online you can crush and add to a drink / food. This stuff it says NOT.

CAMHS prescribed a liquid for this reason as he’d never tolerate a tablet. 😣

You can’t crush this one in tablet form either it needs to be taken whole as it works over 24 hours.

I keep thinking, as I mentioned yesterday, he can have the syringe and immediately following drink his smoothie, so why not drink it in the smoothie?

I can’t imagine anyone spiking drinks in a club has this many dilemmas ? 🤣

I had to give him steroids in fresh orange when he had croup, he’s allergic to penicillin and he can’t tolerate erythromycin so that has to go in fresh orange, I’m sure you aren’t supposed to do that, but I don’t have much choice. It’s always cleared his infections / croup so must work!

I’ll just have to do this in the drink and see how it starts to work.

For what it’s worth, yesterday, he was so much less anxious not on the old stuff. (I know it’s not the new stuff as that’s weeks away from having an impact yet!) He was still his adhd ds self, but a far less anxious one!

danni I think all you can do is work on trying to get him to take it via syringe. I agree though, unless it says to take on an empty stomach I don’t know why it would make a difference. Hopefully once he gets used to the taste he’ll be more willing. Good he’s less anxious though.

Ds awake at 2:45 today and up about 3:30. That’s the first time in a few weeks he’s woken that early and not gone back to sleep for a while.

I’m not sure Danni. We had the tablet and had advice from 2 practitioners one said you could crush it and one said not. I think they make it up half the time.

no expert but if it’s a liquid and going down the hatch in a drink or not in a drink I wouldn’t think it mattered… but what do I know?!

DHs dads bthday today. Nice lunch booked with IL and the discerning SIL and husband with no kids. I just cannot wait. Stomach turning already. Wish me luck.

we discussed this before but how would you all deal ? Dh says DS should go, he’s ‘part of the family’ and it’s a big bthday. For him not to go would mean one of us not going which would look odd! Tbf he’s often ok I’m just hoping for a non hyper meal…