Disabled kids,the forgotten Covid victims

[NotEver0]

I barely made it through this year coping with my severely autistic,learning disabled son being at home for the best part of it due to Covid. I struggled desperately without him at his much needed Special needs school and many a time in my darkest darkest moments thought it would be easier if we both just died..
I cried tears of relief when he eventually went back in August and went to bed everyday as soon as he left for school as I was so so exhausted, He barely sleeps and never sits down.He needs 24 hour supervision and self care assistance with everything.
Now it's happening again and I just don't know how to drag my mind and body out of this pit of dark despair that I'm fast hurtling into.I know I'm not alone doing this,its just so many things have been ill thought or given no thought,nothing seems more important than bloody covid.

This issue seems absolutely what I’d imagine @MNHQ could helpfully and effectively get involved with. But nothing. Have to say I’m very disappointed and a bit perplexed. Not even a supportive comment. In fact they started a thread for all parents struggling and didn’t even link us here. They were asking for people to speak to the media which could have been an important opportunity for mums of kids with complex and severe SN. Nothing.

I reported one of your understandably desperate posts last Monday, @NotEver0, was assured they were “aware and reading and we're keen to get back and engage on the thread as soon as we've got an update.”

A week later, nothing. I can only report again in an attempt to support parents and carers in this unsustainable situation.

Can someone sum up what help you are looking for from MNHQ? I’ve skimmed OPs posts and several pages but am making sing the thrust of what’s being asked for.

MN have a voice and a platform, as OP put it. They use these to run campaigns, see www.mumsnet.com/campaigns

I think in the early days of this thread simply a supportive message saying ‘we’re reading this thread, we haven’t forgotten you’ would have been welcome. That point may have passed now, I don’t know.

They could have linked to their thread where they asked struggling parents in general to speak to the media.

Anything rather than nothing, I’d guess.

I think the last MN campaign centred on disabled children was This is My Child? It was some years ago now.

I haven't forgotten you; if my son was still living at home I would be where you are now - way beyond the end of the rope.

Just giving this thread a bump, and sending you all courage and strength💐

Bump

@MNHQ You commented on this thread on the 25th December and haven’t said anything since. Pretty bad form to not even pop on and say you hadn’t forgotten us!
Many of us are struggling even more at the moment because even though vulnerable kids such as those with EHCPs are supposed to be receiving schooling, we are getting nothing - no school, no online learning, nothing.
Will you help us or not?

My DD’s special school are providing 2 x 40 minute online lessons a day. That’s it. That’s a
full time education if you’ve got SEN.
My other neurotypical DC’s school has provided full time online learning since Tuesday last week as a comparison.
As a parent, I need to be there to facilitate those two lessons so I’ve no break from caring responsibilities throughout the day. I can’t do this until March.

Hello - as you've seen from the other thread (please do post on it, it didn't occur to us any group of MNers would feel they couldn't) we're collecting ideas right now for what MNers think the government can usefully do, right now and in the months ahead, to relieve the pressure on all parents.

We've already got a line in that on the desperate need for an urgent plan for special schools and a need for the DfE to lay out expectations for remote learning for children with SEN in mainstream schools, but we're sure you'll have further suggestions and refinements so do please contribute them.

Bump

BBC NewsNight have done a report on how the pandemic affected the teaching of children with special needs:

www.bbc.co.uk/programmes/p095xs71

The reporter also has a really good thread on twitter:
twitter.com/lewis_goodall/status/1356726047199346691?s=21