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 ❤️

Your post has made me laugh - your new boss reckons hes a hottie?!?!

The thing about men is that they are audacious beings!

So glad your adhd meds are helping - I've got a ways to go there but its nice to know theres light at the end of the tunnel

Hope the youngest is doing better? ❤️❤️

You did your best! Parents of SEN children end up having to learn so much about everything - the SEN, the SEN CoP, education law, benefits….the list is endless! It’s a steep and usually an unpleasant learning curve! We didn’t choose this job, because we thought we had an aptitude for it. It’s forced on us - what more can we do?

Honestly I feel terrible. Thats another 18 months now at least, trying to sort this

Everything for a reason I suppose but ive no idea what that reason is 😟😟

Thank you - agree we didnt choose this life but were chosen ❤️

Oh @mumofoneAloneandwell I’m so sorry lovely!

is there any way forward at? Did you chatGPT it ? Did you ask wise MNers?

you’re doing sooooo amazing ! I’d give you a massive hug if you were here !! Have a glass of wine tonight , would that help? xxx

Hi all, sorry im just catching up. Sending support to you all.

@mumofoneAloneandwell dd is non/pre verbal, and you have to help with all personal care, no? I cannot see how you would be refused. Im so sorry. Please appeal. If I can help in any way please pm me.

Me and dh are having 3 nights away this weekend! Never done before and much mum guilt happening here!

@mumofoneAloneandwell I am so sorry, dealing with DLA is an absolute nightmare.

Yes we do see a few doctors but we are lucky as we have a Roald Dahl nurse who is good at coordinating all aspects of his care and advocating for us. We also live fairly close to a major teaching and research hospital so lots of his care is led by them.

Hey everyone

Dd is pre verbal at almost 7. She has HIGH support needs and imo high mobility needs but they disagreed 😟

Thank you - i feel exhausted by it all. She has the lower end of the dla but we haven't been awarded what I think she needs

(I'm trying to limit my screen time, so far so miserable without my emotional support aibu threads!!)

@Helplessandheartbroke ohh have so much fun! No mum guilt necessary, ds will be fine - is he staying with your family?

@BrentfordForever thank you 🥺 - I'm off the wine and vowing to lose weight so I had a chicken soup 😄😄 but had a coke zero can with it, so it wasn't too bad

I did everything, it just wasn't enough

I can reapply but then I worry that we'd lose what we already get now. So i'm unsure but will sit on it. I cant question the appeal because I disagree with their decision apparently, only if they messed up on a point of law.

Thank you @Seawolves - so good that youre near a hospital for ds. I hadn't heard of a Roald Dahl nurse before, what an amazing job they do. So much easier to have someone who knows how to coordinate it all! Just one less bit of stress on all of your shoulders

That sounds really wrong @mumofoneAloneandwell if your DD is pre-verbal at 7 and is only getting lower rate care? Did you have any supporting evidence to go in?

To apply to the Upper Tribunal it's right that you have to identify an error of law but that can include failure to give adequate reasons or failure to consider material evidence. Please DM if you want to know more about appeals to the UT.

Thank you i will tomorrow - we were appealing on the mobility element but honestly I just feel like giving up 🥺

How are you? ❤️

We've just managed this year to get moved from low rate mobility and medium rate care, to high for both.

We were given high mobility, despite him being physically mobile, because of severe mental impairment, including exhibiting dangerous behaviours.

If there is another way to contest their decision, might be a good route for you too?

I'm alright @mumofoneAloneandwell but also in the midst of legal tangles 😂it's so dispiriting, isn't it. Ours is for a specialist school for secondary. LA's response due next week and I have absolutely zero confidence that they will send their response and evidence on time. Even working in the legal field myself (sadly not in SEND or DLA) I've found this challenging.

Hey all

Apologies for the radio silence - life was lifeing

How have you all coped over the easter weekend?

My dd chucked her egg in the bin and wanted nothing to do with the whole thing 😄😄

How are you feeling? When do you hear?!

Its awful! Just an awful system x

I tried to argue SMI but they say she isnt a danger to herself. I didnt make it clear enough 🥺

Well done on that achievement, because that's what it is! I will email and see whether I can appeal further

The thing is. If i go through this all again, they could reduce her care element

Hey @mumofoneAloneandwell my dm had ds and took him to a caravan for the weekend. I can honestly say benidorm is rough 😂i won't be returning. How are you dd getting on?

Hey ❤️ - how did it go, did he have fun?!

And hey to you all ❤️❤️

Apologies, struck down with a cold here

How are we all, did we all have a good easter holiday?

Back to school on Monday - i know we'll be split as to who is happy/worried about it

Day one of homeschooling for us approaching - got some maths, manners and reading lessons planned 😬

We spent most of the Easter break in and out of the assessment unit at our local hospital trying to manage gastroparesis, I am hoping we have more of a handle on it now. Not quite the break we were planning but that's how life goes with kids sometimes.

Oh @Seawolves I am sorry!

Yes that is how life goes - how are you all now, and how is the patient 🥺🥺 xx

He seems to be doing OK, back at school and loving being with his friends.

How's home schooling going?

Ugh, I'd stepped away from mn a bit and things had been pretty much all good then today D's had an epic melt down in the park - hit another child, kicked my mum in the leg and she's now got huge bruises. Stemmed from some unkind words from his friends but obviously it's not ok for him to physically react like that, his fight or flight kicked in. Now expecting a night of containment for the huge guilt and self dislike he is feeling ☹️