SEN PARENTS SUPPORT GROUP - Thread 1

[mumofoneAloneandwell]

Hey everyone

this is the original thread that was started for half term:
https://www.mumsnet.com/talk/_chat/5491563-half-term-sen-parents-support-group?page=1

but we’re carrying it on since it’s been helpful

all parents of sen kids are welcome - also those who’s sen kids are now adults!

safe space to vent, share advice, tips and tricks, share good news and bad, and just chit chat and be 🙂

i am a mum of one dd. She’s 6 and is autistic and not yet verbal. It’s just us, no support system so I am thankful for the people on here keeping me company through the journey ❤️

Hi all, I’m a lone parent with a DC17 who is AuDHD and have ADHD myself

Hey welcome

I also have autism myself but have lower support needs

I have late diagnosed ADHD (explains a lot tbf)

my DC is still up. We moved. The GP is not SEN informed and basically couldn't GAF about the fact that the night routine takes me all evening and I am still going to be running back in to their room and doing another settle.

I believe it depends on the type of medication, so you might need to ask your provider.

My DS is on a type which does not need to be tapered down if he comes off it. For us (and through experimentation and discussions with his psych) we give him medication breaks in the holidays of a few days here or there. This has meant we have been able to keep his medication at a relatively low dose (20mg). I kept him off it for about 3 weeks in the summer holidays (he was having his blood pressure and heart rate monitored by the pharmacist throughout and the stats sent to his psych) and the difference was pretty awful- he was emotionally disregulated and erratic. We thought that would not really work for us again and he hated how he felt within himself.

He's doing GCSEs this year. It's pretty hard and the school he is at is really worried about their results so the pressure is hideous. We are trying to manage it....

Afternoon all. Been trying to get my head around the evidence I need to submit to the Tribunal. Deadline is 3rd March, even though the bloody Tribunal itself isn't until next Jan 🙃 The parental statement is challenging. Our chosen specialists school is stating they're full. Which isn't a legal defense but apparently its my job to prove this. School Sendco has been absolutely bugger all help. I've emailed loads of times and had no reply. I'm not happy. She said she'd be there to support us, turns out that was BS. So here I am. Haven't done this much research/writing since Uni.

@TiredYetExhausted I feel your pain. Just finished dc2's PIP form which they said had to be in by 4th March. Judging by how long it took them to look at dc1's form it will be Christmas before they make a decision.

@iamnotaloggripthis is the one I've ordered but there are other options too https://amzn.eu/d/0fXJ65GX

Ds appears to have had an ok start to the school week (touch wood!!!) - first day he got in trouble for refusing to do his maths as he didn't see the point (!) but yesterday he has a teacher he really doesn't get on with so used what I've dubbed "weaponised compliance" and did what he was asked and said it was a great day 😅

School has assessed son for exam needs and it looks like they can give him laptop, extra time, breaks and maybe a prompter as well to just nudge him if he seems to be zoning out, which is good.

I'm wondering if anyone here has experience of ADHD kids who really resist help, especially on written tasks - we find that anything we offer he'll go 'No, that's the wrong way to do it' (when it isn't) or 'That won't help' (when it would if he tried) or 'That's not doing it properly/is cheating' (when it's using info in a legitimate way). Interestingly today in a teacher meeting we found out that a teacher is having the same issue in his one BTEC that is all course assessed - he gets very insistent that things can't be done that way, even though she is literally his teacher. This is making it really impossible for him to do extended writing because he won't accept any tips/scaffolding etc and he just freezes and can't do tasks.

That's good news @Echobelly

I am thinking about pulling dd out of school due to the commute

@Echobelly I'd suggest trying to get to the bottom of the 'Why' if it's possible. Is it control? Is it that he can't follow the correct method because it just does not make sense to him? Can it be explained in a different way? ChatGPT can be very useful for needing to alter the way someone can absorb the same information.
Is it with everything or just school work?

@Echobelly thats interesting - my autistic 9 year old is much the same, says he can’t do tasks but won’t accept help/gets angry with suggestions for things that might help. At the moment I’ve given up tbh, we’re focusing on other issues that feel more urgent at this age and letting the academics slide - which I’m sure is not a good long term strategy but is the best I can do right now!

His teachers have found he’s slightly more receptive if they give him a couple of cards with pictures/words showing different kinds of support (eg a teacher can scribe for him or can suggest the first sentence or can talk it through) and then he picks the one he wants. It seems to take some of the pressure off of asking for help when he’s just choosing from a limited menu.

That may be too childish for your son though?

@mumofoneAloneandwell - would you home educate if you pull her out? Or is there a closer school that might work?

@Echobelly my dd sounds very similar with written tasks it’s like the fear of failure means she has a complete block on writting even though very capable. She’s out of school now and I’m helping her to do work & getting things wrong then processing that has actually helped her learn it’s ok to not get things correct or make mistakes and that you need to as it’s part of learning. When she’s really blocked I will ask facilitating questions she talks about the answer and I’ll capture notes by typing them up and she then edits them into a sentence/ paragraph. We’ve also played around with free voice to text software. English is her nemesis but she’s very aware it’s an exam she has to try and pass. So she is now mostly on board with just trying to get it done and never do it again mentality. Ironically away from “school” work she has written & recorded her own you tube scripts then used an AI voice to upload them onto her channel. So she’s very capable of “written” work and a very good clear communicator just has a complete block when it’s being assessed for exams!

@Echobelly The other approach that worked was using visuals. She had a tutor who worked on imaginative writing with her. They did it all but taking an image, talked about it then captured some description of the image, then turned the image into a setting of a story and added another image of a character and so on. Using a linked visual was / is key for her as she has a great visual memory but struggles a lot with more vague text heavy instructions or descriptions.

Thanks all - I don't think visuals work straightforwardly. He's had some writing tasks with a picture cue and even saying 'Just list items you can see' doesn't work because just goes 'I can't see how that will help' so he doesn't do it.

@Whydidyougothere - it's interesting that you are the second person recently to mention AI as a facilitating tool, but DS is really against using it! I do want to try voice recording for extended writing, I haven't had an opportunity to try it yet.

We've set a target for him to try a few writing exercises at home - we bought some story cubes today and DH set him writing. It took him a long time, but he did come out with something fairly extensive, it wasn't great writing (which is fine) and he did go beyond the bare minimum, with some good expressions in it as well. I was really glad to hear DH say he recognised that we are just getting at making him write right now - DH historically has a habit of 'challenging' DS on his output when DS just needs praise and support for the output so he develops the confidence to actually have an output!

It's fine to challenge oldest DC, who doesn't have DS' difficulties and does very well academically, to go above and beyond, but DS needs to walk before he can run.

@Echobelly sorry I meant to clarify, to use AI to give you/his teachers alternative ways to get output rather than him using it or using it together.
If the ways already suggested aren't working there may be a way ChatGPT can come up with a tailored alternative.

Oh yes, I have tried AI myself, it seems to have some goods suggestions - this evening I asked it for a mixture of short and longer tasks and they seemed helpful.

How come it’s so far if you don’t mind me asking ?

is it a specialist? Can she actually tolerate such long distance ? Surely it’s not good for you mentally?

We moved across London and it's in our old area @BrentfordForever ❤️

It's a special needs class in a mainstream primary

I needed to move us but it's just that there are no special schools with a place for her this year.

The battle is on for a place next year 🥺😪

@SoManyFidgetToys id have to home school her, which I can't do

I wonder whether I can remove her on the grounds that it's too far but that we are waiting for a school place 🤔 x

And you applied near your are and +10 miles ?
even though you’re single mum you don’t get priority? How many did you apply for ?
Are you now west or east L? Please don’t worry you don’t need to give details where you live just for me to get an idea as I’m in London too x

I think Chat is a great board to get this going on - the traffic is far higher and you’ll reach more posters, generate more support and share many more ideas.

We had an amazing ehcp review meeting for our 12 year old with learning disabilities yesterday. My autistic children really struggle at school but this one loves it, especially the practical subjects like technology and music. He is just so happy almost all the time and you can tell the staff genuinely care about all the children and want the best for them.

Hi all

Checking in after a rough few days. @mumofoneAloneandwell im sorry youre struggling with the commute. Do you need to stay in London?

Hi pp, you want to talk about it? I've had a rough few days too 💐

...My SEN DC is better now I've officially deregistered and we're back to home ed, but I miss the DC being at school if that makes any sense

What's right for my DC is the main thing but it's hard

Hey

You should be proud of yourself doing home ed. What made you take the leap? It must be a big strain.

I've been torturing myself not taking ds to hospital after a bump when deep down I know i prob should have. School nurse has checked him today and said hes fine but mum guilt kicks in!