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 ❤️

Welcome @MaineCharacter will reply properly tomorrow as im just logging off to get some much needed sleep

Thanks Helpless ❤️
I am also (hopefully!) going to sleep
Goodnight

Hope everyone managed a decent sleep.

ds slept ok last njbbt but his feeding pump was a nightmare!

Mine is a good reliable sleeper so long as I’m next to him, DH and I haven’t shared a bed in years but at least we are all getting enough sleep! I really feel for you all struggling through without enough sleep. Big advocate of naps if you can manage it!

morning !

is it the long release melatonin you give? This should keep her asleep

So sorry some people are so insensitive, I imagine it's like a little heart stab with every "well meaning" comment.

How's back to school gone for everyone? Ds is definitely having some big feelings about going back which is coming out as defiance and shouting.... I was going to have a lie in and make the most of DH being off but it was all getting a bit tense (I think DH struggles with the outright "I'm not doing it" and ds definitely tests him because he's more used to me and my boundaries on a usual school day). Still, one slightly better mooded boy in the car and off, first day of meds at school, wish us luck!

@mumofoneAloneandwell hi op thank you for the new thread it's filled up super fast, I feel like I need to catch up on it,it's only been a couple of days. I have no support network either and the thread really helps xx

just a very quick pop on to say hi, and wish you all luck

dd is still asleep, went down at gone 3am

I am trying to rouse her now, hopefully to get her in for the afternoon

Hello. 👋🏻

9 year old with autism, ADHD, global delay (currently around 3y/o), limited communication and forever sleep issues.

We’ve got an inset day before he goes back tomorrow.

Been up since 4:30am, he’s spilt juice all over his bed, and would definitely like to go out (keeps saying car-airplanes)…. but also will not put any clothes on.

Nearly tomorrow!

Hello 👋

DS8 NT and DS5 autistic here, EHCP at mainstream, banding has just been increased because he's been thumping a classmate he is fixated on 😔 Which is so awful as he thinks classmate is his best friend. Struggles immensely with social skills. He is otherwise verbal but speech is very atypical, extremely quirky but generally a cheerful gorgeous lad and we are tentatively out of nappies during the day now 🙌 We are starting to tour some specialists with a view to moving in the next few years (depending on how the behaviour goes for the rest of YR).

Keeping an eye out for the white paper today.

The problem for us is that our (adopted) DD1 (16) does very much need sleep, she just doesn’t sleep well at night and gets very tired. She’s undergoing an ND assessment right now, on the NHS. She had a private assessment back in 2023, which diagnosed her with probable FASD, with traits of autism and ADHD.

Additionally, she has epilepsy and we suspect her medication might be adding to her sleep problems.

She’s doing well at a specialist college now, but her tiredness means that she’s often late. We’re hoping that she will be in residence from next September.

Thank you for starting this thread!

We made it in!

I can’t read the white paper results as I need to keep my stress levels as low as possible - would be very grateful if someone could summarise the outcome, I know that fewer children will be entitled to ehcps

Hi all

Ds didnt sleep until 2ish, shattered today. I've spoke to the school nurse i have around an old injury and shes going to check him over on thursday for me. Im worried sick. My anxiety is through the roof.

Is it a Flocare Infinity 3?

No we are with Abbott so have the freego. The past few weeks we have had a lot of occlusions and no idea why!

Worried about the white paper 😓

I'd like to join if I may.

Ds1 is 15 and in a private mainstream. But struggling. I feel sick about the white paper tbh. Although it won't affect us directly it seems. I just seems so spiteful, so vicious, so detrimental, designed by ignorants who want to shit on the most vulnerable.

Ours likes to tell me "Air in giving set" when there isn't. It likes to do it either when I am driving or in the wee small hours, it never seems to want to misbehave when I am able to attend to it immediately.

Just been sent timetable for DS's 'One Year to Go' GCSE mocks in May-June and I feel slightly sick. Until about a year ago I thought he'd be OK but he seems so far off ready for even this stage. I am going to try to find an English Language tutor because if he can only get over his block about writing pretty much anything in a test scenario, I think he would be quite good at it but I just don't have the ability or patience to help him.

Please can I ask is he not medicated for adhd? I am not saying he should though, but it might help …

That’s lovely re your dd @Sirzy
mine isn’t fazed with animals but I might take her to a city farm again to see whether that’s changed!

He is on meds, and it does help but it only goes so far. I guess it can't help him remember everything he's taught. DH isn't keen on DS taking it at weekends and holidays but I think maybe he ought to?

@Echobelly if English is his blocker I would find out what exam board he is sitting and you can find lots of resources online in particular you tube walk throughs of papers and mark schemes etc. some kids are able to learn a format to adapt to different styles of questions. My dd has a block with English too it’s so stressful as she’s happy type up her own stuff not that directed by teachers!

I've tried to explain to him that it helps to have stories ready to whip out. Je's recently explained he often has ideas for stories (and the one he told me was really good) but he is convinced they are too weird for the boring prompts they get. I told him I always found ways to shoehorn my ideas in, no matter how boring the prompt and how weird the story, but the trouble with DS is he just refuses to accept solutions. He'll just insist what you suggest won't work - this drives my DH mad and he takes it very personally whereas I just find it frustrating and sad and have no idea how to help him.

A link would be great, thank you.

I hope everyone had a good first day back. I was out early but I’m told DD was ok this morning, and DS made it on time despite still being in bed loooong after he shouldn’t have been…