Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

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

OP posts:
Thread gallery
7
danni0509 · 07/09/2021 13:16

When I mentioned it to school before, the teacher said xxxxx doesn’t like physical contact (fair enough - ds is totally the opposite) so if ds grabs her she lashes out, so because of the reaction he gets from her (ds loves it Confused) he purposely touches her, so he’s getting whacked every day 🙄 but I got the impression from ds teacher they were blaming ds for winding her up.

Hard one, because that’s part of her disability not liking to be touched which is fine and ideally ds wouldn’t keep touching her and pissing her off but then part of ds disability is thriving off reactions which is what she is giving him by smacking him one and kicking off with him so he’s seeking it out and will continue to do so.

I’m not having ds solely blamed though, as though it’s his fault. Because he’s doing it due to his disability like she is with hers.

They are separating them but ds is out of the classroom which isn’t going to continue long term. Because why should he be kept from the classroom?

Need to talk to his teacher again……

danni0509 · 07/09/2021 13:19

Also having to be dragged off ds (which has happened on two separate occasions) is a bit extreme..

danni0509 · 08/09/2021 13:12

oxleas.nhs.uk/site-media/cms-downloads/NVR_for_parents_web_mgRKEiw.pdf

Interesting read on NVR, I particularly like chapter 6 about the baskets.

danni0509 · 08/09/2021 13:17

oxleas.nhs.uk/site-media/cms-downloads/NVR_-_Rebuilding_Family_Relationships.pdf

Also another read on non violent resistance.

livpotter · 08/09/2021 19:49

Thanks for posting those danni, they are really helpful.

Hope everyone is ok, I've been reading along but we've had a really stressful few days. The LA messed up ds's transport to school (along with another 200 children's transport!) so I've been taking him in.

Then last night we got evacuated from our house because of a gas leak across the road! Ds has handled all the upheaval really well. He really couldn't accept not going home until I showed him all the police lines/fire truck etc. Then later when dd was upset about not being able to go home, ds said 'police say no' Grin. Anyway we got back home at about 11pm!

openupmyeagereyes · 08/09/2021 20:26

Thanks danni, that was interesting. How was ds at school today?

liv that must have been stressful but well done to your ds for coping so well.

Ds has been in to school for an hour each day which is great. I had a positive meeting with the head and SENco today too. Hoping he’ll continue with an hour this week and we can build from there as we did in the autumn.

OP posts:
livpotter · 09/09/2021 17:55

Well done for getting him in open!

danni0509 · 09/09/2021 19:48

Sorry going to be long.

Ds had his appointment today with young minds matter. He see a psychiatrist who specialises in adhd. Disaster start to finish, wouldn’t let the dr weigh him / do his height / do his blood pressure, trashed the room, wrote all over the wall / drs note pad in green highlighter pen, set the air conditioning at really warm temperature and the dr couldn’t change it back / pulled all the face masks out of a box / squirted hand sanitizer all over the table. He was counting in 5’s really loudly so we literally couldn’t hear each other speak, I’m having to manage him during this whilst trying to talk to the dr all flustered.

The dr was 😳😳 at ds asking me if he’s always like this. Yes hence why where here!! He kept saying sorry I can’t hear myself think. Sorry can you repeat that etc etc. Ds please don’t touch that, ds please stop touching that. He practically kicked us out of his room and made us wait in the waiting room whilst he did his prescriptions where ds just kept drinking out the water fountain with his mouth under the tap rather than using a cup and repeatedly pressing the bell at the reception desk she had to take the bell off, all these other parents looking at me like shit, so embarrassing to have no control over my child.

He asked me why I had not got ds an autism diagnosis, I said he had one years ago!! He said oh sorry that’s not anywhere in his notes.

Asked if he had been diagnosed as having a learning disability and I said well on his last lot of paperwork from his consultant who we see for autism it was on that but she had not directly told me iyswim, then he asked if he had any other diagnosis’ I said no, just adhd & autism so he was writing loads of notes for some reason as though he thought he had something else aswell. No idea what he was getting at, I couldn’t hear myself think so didn’t ask him to elaborate.

He’s prescribed ds methylphenidate, 2.5mg morning, 2.5mg lunch, 2.5mg tea time, he said in mild & moderate cases it’s twice per day for school days only but for ds he wants him to take 3 x doses a day x 7 days a week. It’s a bloody tablet that ds has to swallow whole. I explained this is going to be really difficult and he was like well he has to start on this short acting one before we went to once a day long acting one and this one he’s got only comes in tablet form.

I’m starting ds on it Saturday morning but honestly don’t know how I will get it down him, plus he’s going to have to have a dose at school every day and they won’t be patient like I will.

He’s prescribed Promethezine for his sleep too I don’t know too much about that so will have to google, i don’t think I’ll start that yet too much to quick and all that..

I’ve got to ring YMM in a week and let them know how it goes and they can increase his adhd meds as and when.

openupmyeagereyes · 09/09/2021 19:54

Big hugs danni, that must have been so draining. But, on the positive side at least he saw how bad it can be. Worse I think if he’d been much better behaved than he is usually is Flowers

OP posts:
livpotter · 09/09/2021 20:04

Oh danni that sounds tough! Reminds me of an appointment I had with ds a while ago where he basically destroyed the dr's office. I hope the medication works for him (and you!)

danni0509 · 09/09/2021 20:24

Thank you x

I just need to know how I’m going to get ds to swallow a tablet whole, any advice? Well it’s technically half a tablet, 5mg split in half at each dose to start with. He does not co operate with me for anything.

I know liv, I pray it works, sounds awful but ds behaviour makes me ill, I get a pounding heart and short of breath and feel sweaty and can’t think straight when he’s doing that sort of shite. It’s like mass anxiety I only ever feel like it when he’s being extreme but it’s happening too often these days.

openupmyeagereyes · 09/09/2021 20:53

danni chocolate or some other sort of treat? Whatever it takes.

OP posts:
dimples76 · 09/09/2021 21:25

Oh Danni how exhausting but I agree with Open it's good that they see the reality. DS often goes onto charm offensive at medical appointments and I worry that they think I'm exaggerating.

Re getting him to swallow the tablet. Is it permissible to grind it up and mix it into food/smoothie or something. I think my first port of call would be bribery with chocolate/sweets but I know DS can be immune to bribery. You never know you might just get lucky. We all had to take worm medicine recently and DS was fine - I struggled the most!

carriebradshawwithlessshoes · 09/09/2021 22:14

Well I don’t think the Dr should have been that shocked if he specialises in adhd for Gods sake. Not very professional for him to show any reaction! I agree with other comments about it was really good that he saw him like this tho… no good DS being on best behaviour and not getting the help he needs. Keep us posted Danni, we have our fingers crossed for you both.

Re taking the tablet whole we have this with DS re the melatonin. You will probably need to play around with different things and all our DC are all different so this may not work for your DS but we have had most success putting it in something smooth that you have a natural tendency to just swallow not chew. DS likes a spoon of honey or we use jam or jelly. Yoghurt? Have you mentioned he likes choc pot desserts or am I making that up?! Then we give DS immediately a gulp or use a straw of a favourite drink to ensure it’s def gone. We have tried hiding in something like a strawberry but he tends to crunch. Putting it in his mouth then giving a drink is too obvious plus he ends up drinking and swallowing but the bloody tablet stays in his mouth!

If at all possible I take someone with me to appointments. dr can then examine DS or whatever then he gets taken out by DH or whoever I’ve bribed to come with me whilst I talk and listen!

Good luck x

carriebradshawwithlessshoes · 09/09/2021 22:19

If it works and he becomes calmer it will then possibly be easier to get him to cooperate… hopefully chicken and egg.

openupmyeagereyes · 10/09/2021 07:10

I agree carrie, you’d think they’d seen everything and could maintain a professional approach. I don’t think children are put forward for meds lightly.

OP posts:
openupmyeagereyes · 10/09/2021 20:36

Ds refused to go in to school today. We’ve had a bit of challenging behaviour yesterday afternoon and today, so it’s all kicked off again this term after the relaxing summer holiday. Hoping Monday is better, though this afternoon was much improved over this morning.

I hope everyone else’s back to school has been better.

OP posts:
dimples76 · 10/09/2021 21:32

Sorry to hear that Open, hope that next week is better.

Good luck with the tablet tomorrow morning Danni.

We have been lucky that DS's return to school has gone well so far. We both love his new TA and she has succeeded where I and his former TA failed and is getting him to drink a lot more. Was playing phonetag with the play therapist from the continence team earlier but hoping that we can fit something in soon. I am sick to death of cleaning the sofa after wee accidents. Haven't got an appointment for a bladder scan yet.

carriebradshawwithlessshoes · 10/09/2021 21:58

Return to school has been fairly dismal. DD skipped off happy as a lark. DS a bit more unsure. Senco has changed, one to one has changed, teacher has changed, no one suggested we chat to any of these people to try and facilitate a better situation for DS this year. So DH and I suggested it. It was met with more rolled eyes from the Head who said he wanted to be there (bet he does).

I caught the Head in the playground yesterday and said it had occurred to me that no one is trained up in DS’s epilepsy emergency meds now old staff have left/ moved on. More eye rolling. So I have to sort training do I? Eye roll. It’s clear unless it’s a child like DD he thinks it’s all a pain in the backside.

Dimples I’m interested… is there continence nurse linked with school, what do they suggest? School telling me DS is pooing every day after lunch (eye roll) in his pants. The comment literally ends with a big full stop. One to one said it’s not her fault she’s not with DS then she’s having her lunch. To be fair DS will most probably not alert anyone to this fact. He will just do it.

Is it not expected that schools will offer some suggestions rather than just make the statement and an eye roll? DH found something online yesterday (ERIC I think) from the founder saying even the most disabled child can be generally toilet trained. So who assists with this???? I’m out of ideas and school just state the problem and eye roll (as with everything). No suggestions as to what the f to do.

Emailed DS’s OT after recent comments on here… she’s not replied so clearly not taking any responsibility for it!!

Dimples, keep me posted if you don’t mind! At least it’s only wee! X

carriebradshawwithlessshoes · 10/09/2021 22:08

If not linked with school Dimples where are these people (the continence team)??? I’m happy currently to sign over my life savings to them if they could help if only to stop the eye rolling at school and assumptions that they take from this (that DS shouldn’t be there…)

dimples76 · 11/09/2021 08:25

Carrie that is totally unacceptable from the school. It sounds like your DS has a regular pattern of pooing so it should be the simplest thing to have a member of staff take him to the toilet a couple of times after lunch.

Re the epilepsy training, that is shocking. I can sort of understand the head not spotting the problem but after it's been pointed out not to deal with it is awful. I can't remember if your DS has an EHCP. I would put your query in writing and possibly copy in the Council.

The continence team is based at the hospital. I had previously requested that the GP refer us but he said that it had to go through school and school nurse team but despite a lot of chasing we never got anywhere. So I asked DS's paediatrician (unfortunately since discharged) to refer us. There was about a 6 month wait but I did feel when we had our initial appointment a few months ago that it was taken seriously and there was a positive, we will sort this attitude.... Not much progress since as neither the play therapy or scan materialised so I was glad to get the call yesterday and I have a telephone appointment with the nurse a week after next.

MagratGarlikInDisguise · 11/09/2021 09:06

Wow @carriebradshawwithlessshoes they don't sound like the most supportive school!! The epilepsy meds issue is especially worrying. I would write to the Head expressing concerns with senco copied in. Who cares about their eye rolling it just makes them entirely unprofessional. I remember the head of DS' old Ms smirking a lot. Fake concern etc. I think these people only want to.teach and nurture children who follow expected development models and don't cause them problems or need funding. Then they just want to get the child out of their school. It's such an absolute shame especially for young children. I wish I'd been less nicey and apologetic after one of DS' episodes and instead asked them what they planned to do about it. In your email, I would state that DS has continence issues and so how will school support this? What steps can be taken? If they say they can't help, it's further evidence that they cannot meet his needs. Or won't. O realised that we didn't even get any IEP targets for DS once he got the space at his special school, like his old school just gave up! Challenge them as to what they're going to do to help, put everything in writing, start looking for alternative settings.
@danni0509 hugs on the behaviour at the appointment but it was hardly professional of the doctor to be so shocked! Surely that's what he sees?? So glad your DS is accessing the help he needs to allow his personality to shine through, hope it all goes OK. We'll done @openupmyeagereyes on getting DS into school.
We are OK, week 1 in new school done, DS likes it and lots of positive communication home. His timetable is all in small chunks, lots of sensory and pe and yoga stuff, and the academic stuff. They do cooking too! DS' only bugbear is not being first out in the taxi queue!
Sorry to anyone I've missed, have good weekends all!

danni0509 · 11/09/2021 16:30

Ds wouldn’t take his medication at all this morning would not put the tablet anywhere near his mouth, loads of tantrums / hitting me so I rang a pharmacist and asked if I could crush and add to a smoothie, I was told at the original chemist I collected meds from the other day I can crush it into yoghurt if I’m desperate but ds doesn’t reliably eat yogurt, only now and again.

Pharmacist today said smoothie will be ok… went to Tesco got 3 bottles of smoothie.

Managed to get the three doses in ds today crushed and mixed into smoothie (he has absolutely no idea I’m lacing his drink) he’s drunk all the drink, all medicine taken etc.

There has been no difference in him whatsoever he’s probably louder if anything 😳 he’s been on the arm of the sofa doing roly polys off onto his head thinking he’s hilarious, just being loud / crazy general ds.

Methylphenidate isn’t a build up affect from what I’ve read, it’s instant delivery..

So I’m a bit Confused

No idea…

danni0509 · 11/09/2021 16:36

Went out for a walk got back to my car I said to Dh get screen wash out my boot fill it up, I was trying to get ds into the car whilst Dh did this, ds started smacking me / getting away from me to get to my bonnet then starts trying to climb into my open bonnet where the engine etc is Hmm this is after medication, I mean that’s how he behaves anyway so I know for a fact there isn’t even 1/2 a % difference in him he’s just behaving as he usually would.

He looks like he’s had something, like his eyes. He looks different but isn’t acting any different.

I’ll give it a week then ring and see what they suggest.

openupmyeagereyes · 11/09/2021 17:11

Sorry danni, that must be disappointing. They will probably up the dose?

OP posts: