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Original poster

Primary school auties: summer and the new academic year - thread 7

999 replies

openupmyeagereyes · 23/07/2021 04:25

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

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carriebradshawwithlessshoes · 18/11/2021 12:30

Thanks open. I thought I remembered the LA saying as soon as we consult the consulting school will pick up the phone to the current school to ask what DS is like. Actually one speech unit said they wanted to observe DS in his current setting and would do so before making an offer. I can see him getting no offers if that’s how it works!

That’s good re school Open!! Glad TA has resurfaced.

Original poster
openupmyeagereyes · 18/11/2021 13:08

Maybe they will. They get sent a copy of the EHCP and it generally goes to a panel meeting to decide. I think that ds' new school do a visit as part of the transition programme (it feels a bit weird calling it the new school as we still haven't had formal confirmation from the LA). I wouldn't worry too much about a school visit. I would think that they would pick up on the way that the school is working inappropriately with ds. Does the EHCP state how he is best supported and list his strengths?

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Original poster
openupmyeagereyes · 18/11/2021 15:45

I have had a call from the caseworker to confirm ds has been offered a place. He only has four weeks left at his current school.

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MagratGarlikInDisguise · 18/11/2021 15:58

Special schools are often very clued up about inappropriate provision in mainstream and understand your child's behaviours alongside your own anxieties. The hard part in my experience is convincing the LA he needs Special school. We had to go to tribunal in the end! They want to keep them in Ms as it's cheaper, shocking really. In our draft ehcp, it said that the LA agreed re Special provision. We thought that meant they agreed he needed Special provision. Turns out, months later, what they meant was that they agreed to consult our preferred Special school, before meeting on a panel to decide he didn't need one!! No minutes from this meeting were taken apparently and no one could tell us who was there. Their wording was deliberately ambiguous. Fortunately, we didn't give up even when we were being gaslighted, and a space strangely appeared just before tribunal date...only then was the school written in section I of the ehcp. So my advice would be to watch out for la tricks like that and remember you can always appeal.

MagratGarlikInDisguise · 18/11/2021 16:01

And well done @openupmyeagereyes, great news!

danni0509 · 18/11/2021 16:52

How do you feel open? I’m pleased he got a place and long term it will be the best decision for you all.

Ds had his appointment this afternoon, the dr did my blood pressure, as a way to try get ds to have his, I knew he wouldn’t have it but we keep trying at his appointments so today we did mine to show him it doesn’t hurt, the dr said mum your blood pressure is high. (I haven’t had it taken for about 3 years) I just looked at him and said are you suprised 🤣 not sure if it’s because I was stressed at ds being naughty or what. Anyway will have to keep an eye.

I told the dr I’m going to buy one for home and keep doing it so ds can see me doing it with the aim to do his eventually.

They have changed ds medication to long release, concerta XL 20mg a day. Once a day. Also increased Promethezine and he’s to have melatonin aswell.

Trial these for a month and then back to see how he’s getting on.

danni0509 · 18/11/2021 16:54

Currently he is just back on melatonin on its own, previously Promethezine was also on its own, so he’s having both together from tonight.

danni0509 · 18/11/2021 16:56

I can’t actually complain about CAMHS. It was a long time getting his diagnosis for adhd because of covid and waiting lists (17 months from school referral) but his appointments are frequent and they are swapping and changing to get the best combo for him.

Original poster
openupmyeagereyes · 18/11/2021 16:59

Thank you. Feeling excited but I know he will find it difficult. He said that he's happy now the TA is back but of course he is only doing two hours with few demands. That cannot carry on indefinitely. We just need to reiterate that he will have fun at the new school too (and hope he does!) and that it will be much easier for him to cope with. I'm sure we will both shed tears over it at some point.

danni is the medication a non-stimulant sort as the paed mentioned? I hope this combination works better for him.

And no, I'm not surprised your blood pressure is high!

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Original poster
openupmyeagereyes · 18/11/2021 17:01

We have been sent transport forms but I just want to take him myself until he's a bit older.

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MagratGarlikInDisguise · 18/11/2021 17:02

I'd take the transport @openupmyeagereyes as it gets them used to.it!

danni0509 · 18/11/2021 17:09

Open no it’s still methylphenidate so still the stimulant version, but the dr is hoping delivery over a longer period will help with his moods because short acting they come down from the dose wearing off until the next dose is delivered and can affect mood / behaviour.

If it’s given at 8am it should be out of his system by tea time and then he’s upped sleep meds to help with sleep issues.

Will also help with the whole taking a dose at school, he’s having it late when he gets home so least this one it’s just once a day.

All trial and error and seeing what works best x

MagratGarlikInDisguise · 18/11/2021 17:11

Sorry @danni0509 x post! Hope your blood pressure is OK,keep an eye on it. My DH is trim, works out etc, but is on beta blockers for hereditary high blood pressure and gas been fir quite a few years now.

Original poster
openupmyeagereyes · 18/11/2021 17:24

Fingers crossed, when are you starting?

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MagratGarlikInDisguise · 18/11/2021 17:35

My typos are terrible sorry!

danni0509 · 18/11/2021 17:37

He doesn’t take concerta, sorry it’s equasym xl I can’t keep up with what he’s on atm.

danni0509 · 18/11/2021 17:38

I’m starting him on the increased sleep meds tonight and the new adhd med in the morning

Original poster
openupmyeagereyes · 18/11/2021 20:13

I hope you get a good night 🤞

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danni0509 · 18/11/2021 20:19

I gave him both sleeping medications as instructed, 1 hour and 15 minutes ago and he’s still up fucking around. Every time I go in and lay him down he’s back up as soon as I leave, so I’m sat on his bedroom floor atm and he keeps purposely kicking the covers off laughing.

I do genuinely give up. What am I going to do? He’s on two sleep meds now and nothing works with him.

Original poster
openupmyeagereyes · 18/11/2021 20:43

Hopefully he just conks out very soon. Ds still awake too, dh’s up with him.

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danni0509 · 18/11/2021 21:15

He did go to sleep at 8.40pm, thankfully!

He was infuriating me, practically unconscious at 8.30pm but still kept sitting up Grin his eye lids were down to his chin and his eyes were rolling but he still kept trying to get out of bed.

Let’s see how he sleeps tonight. Dh is at work, so I’m off to bed! 😴

carriebradshawwithlessshoes · 18/11/2021 21:15

What time are you aiming for sleep?? DS only just gone off (9.15) this is normal for us?? DD also still up…!! Tbf both up at 7.30/8 so that’s a fair sleep…??

dimples76 · 18/11/2021 21:16

Thanks Carrie and glad to hear that the relaxed week is working

Danni fingers crossed that the new meds work

Open sounds like a lot of progress. I really hope that your DS likes his new school.

I have finally bit the bullet and arranged to look around some special schools/enhanced provision.
DS has not had a great week at school.

I don't think that his teacher this year really gets him and now that he is in the juniors expectations of behaviour are much higher. He got sent to see the head teacher on Tuesday for spitting - none of his other teachers would have reacted like that.

Poor DD is still unwell and disrupting all our sleep.

danni0509 · 18/11/2021 21:24

He’s up at 3/4/5am Carrie (never a set time, when ever he opens his eyes) similar to opens ds.

Lately he’s not been going to sleep until 10/11pm. Never stays in bed any later when he goes to sleep later.

danni0509 · 18/11/2021 21:29

If ds woke at 7/8am I would be too scared to enter his room to check he was still alive (that’s how rare that occasion would be!!)

Dimples that’s how ds year 2 teacher was, she couldn’t tolerate ds and she showed it. His reception and year 1 teacher were much nicer. Hope your visits to other schools go well.