Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

Disabled kids,the forgotten Covid victims

361 replies

NotEver0 · 22/12/2020 19:42

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.

OP posts:
Sirzy · 24/12/2020 15:56

@20mum

This thread should be Christmas reading for local and central government politicians.

And for entitled whiners. "I wept because I had no shoes, 'till I met a man with no feet"

Disabled lives matter. Old people's lives matter. Carers' lives matter. Equal equalities and equal attention and equal numbers of ministers and column inches would be a start.

I contacted my local MP about the lack of provision for carers and disabled people at the moment. Give her her due she has been fantastic and I have had various correspondences with her on the issue. But every time she takes the issue higher she gets the normal bullshit back in response. The few lone voices can’t do much even when they are MPs
20mum · 24/12/2020 15:58

People can study from home, with the exception of, first, those with SEN needs, and second a very small number of further education and specialist areas. To permit continued attendance at full time physically attended learning centres is a perverse squandering of money combined with a perverse insistence on disease spreading.

Just as WFH should long ago have been the normal way to do office work, so Study From Home should have been the normal way to learn.

The limited exceptions, such as SEN and respite and particular practical study elements, could have a lot more money and staff made available, as well as being easily included in vaccine programmes, because there are so (relatively) few of them in proportion to the masses.

(Respite could be taken to include certain mainstream younger children who are in need of state child-minders, particularly if the parents are key workers and cannot afford or access other arrangements.)

DeRigueurMortis · 24/12/2020 17:07

@20mum

This thread should be Christmas reading for local and central government politicians.

And for entitled whiners. "I wept because I had no shoes, 'till I met a man with no feet"

Disabled lives matter. Old people's lives matter. Carers' lives matter. Equal equalities and equal attention and equal numbers of ministers and column inches would be a start.

Well said. 👏👏👏

bookworm14 · 24/12/2020 17:32

Just as WFH should long ago have been the normal way to do office work, so Study From Home should have been the normal way to learn.

Are you on crack?

I swear to god, covid has sent everyone insane.

SomethingNastyInTheBallPool · 24/12/2020 17:54

^ But at the moment things are starting to get going again - meaning he has 4 appointments in the first week back at school so we will have to sacrifice education again even if schools are open to catch up
^

@Sirzy Exactly the same for my DD.
Sod’s law, innit.

FoxyTheFox · 24/12/2020 17:57

I started a thread a few weeks ago about caring and Carers' Allowance which links in to a lot of issues posted about here - mainly the utter abandonment of carers and the people they care for. I asked @MNHQ if they could take it forward as a campaign and posted in Site Stuff about it too, there was no response.

www.mumsnet.com/Talk/am_i_being_unreasonable/4099176-To-think-the-disgrace-that-is-Carers-Allowance-should-be-a-national-scandal

elliejjtiny · 24/12/2020 18:47

@FoxyTheFox I find people in general aren't usually interested unless it affects them personally. I often feel like I have to jump up and down and shout about how difficult things are before anybody notices. Then I feel guilty for struggling. I wish unpaid carers were treated better. Even moving us up the list for a covid vaccine would be a big help.

SparklingLime · 24/12/2020 21:51

[quote FoxyTheFox]I started a thread a few weeks ago about caring and Carers' Allowance which links in to a lot of issues posted about here - mainly the utter abandonment of carers and the people they care for. I asked @MNHQ if they could take it forward as a campaign and posted in Site Stuff about it too, there was no response.

www.mumsnet.com/Talk/am_i_being_unreasonable/4099176-To-think-the-disgrace-that-is-Carers-Allowance-should-be-a-national-scandal[/quote]
I’m really disappointed in Mumsnet. Having seen @mnhq tagged many times on this thread, I reported a post and asked them to at least comment... fuck all response. If they are not here for the parents on this thread, some of whom who are absolutely on the edge, then I don’t know who they are here for...

DeRigueurMortis · 25/12/2020 00:15

Just checking in to send good wishes to everyone this Christmas.

Thanks
Original poster
NotEver0 · 25/12/2020 00:21

@sparklinglime wholeheartedly agree. @mnhq I Beg And implore you to take this issue and make it known to the media and get it the attention it so desperately deserves.this is mumsnet,support mums please.

OP posts:
Original poster
NotEver0 · 25/12/2020 00:22

Merry Christmas @derigeurmortis and indeed all.

OP posts:
Thefeep · 25/12/2020 01:27

Yanbu - I also have a severely autistic child, with SLD. Thankfully he went back in May after risk assessments but I’m absolutely dreading that his school Might close again. I’m too scared to open emails! . At present he’s due back on the 3rd as he’s residential term time and ive not heard different. He needs to be in school.

MNHQ
HebeMumsnet · 25/12/2020 19:26

Hi there NotEver0 and others,

Thanks for bringing this to our attention. We've flagged it up with our campaigns team who are having a think about what might be possible/most useful.

We're afraid it's a bit of a skeleton staff here this week and next, which is why we've been a bit slow to respond - many apologies - but just wanted to pop by and let you know that we've seen the thread and definitely haven't forgotten you and we'll pop in again when there's more news.

Oh, and Merry Christmas to you and all your families. Wine

DeRigueurMortis · 25/12/2020 19:37

@HebeMumsnet

Thanks very much for the response and a very Merry Christmas to everyone @MNHQ.

@NotEver0 hopefully this is a bit of a ray of sunshine for you and other families in the same situation Thanks and some nice news on Christmas Day.

Love51 · 25/12/2020 19:37

I agree that children with disabilities have been left behind. The rhetoric is that the children are in the place where they are safest, be that home or school. OPs child clearly would have been safer at school. We need to hold the government and LAs to account, and the only way is legal action. Most of the parents of children with disabilities I know have enough on within having the mental bandwidth to pursue legal action, so it doesn't become a priority to the powers that be.

SparklingLime · 25/12/2020 21:19

@HebeMumsnet

Hi there NotEver0 and others,

Thanks for bringing this to our attention. We've flagged it up with our campaigns team who are having a think about what might be possible/most useful.

We're afraid it's a bit of a skeleton staff here this week and next, which is why we've been a bit slow to respond - many apologies - but just wanted to pop by and let you know that we've seen the thread and definitely haven't forgotten you and we'll pop in again when there's more news.

Oh, and Merry Christmas to you and all your families. Wine

Thank you, Hebe. Really looking forward to MN’s response to this once you’re back to the full team.
Original poster
NotEver0 · 25/12/2020 22:26

@hebemumsnet thank you! I'm so glad you are listening,I'm praying this is the start of something which will set a precedence of not allowing disabled kids to be forgotten in such times of crisis.Mumsnet Can make a difference, you have a social voice presence and platform.As others say us parents of such children are bone tired with the daily difficulties we face due to our childrens conditions, this leaves us with very little time and energy to fight our cause and the injustices our kids face.This however does not mean we are not angry,hurt and outraged,it doesnt mean we dont want to be hurt.Your board isnt just a sounding board for gripes or chat or advice, its a community for mothers and carers and woman.thanks again,this Christmas I wish for change.

OP posts:
Original poster
NotEver0 · 26/12/2020 12:25

Bump!

OP posts:
SomethingNastyInTheBallPool · 26/12/2020 13:10

Thank you, @HebeMumsnet.

Original poster
NotEver0 · 28/12/2020 19:26

Bump!just keeping this very real situation out there as our plight needs to be heard,acknowledged and considered, the cure cannot be bigger than the problem.please keep speaking and asking ,many voices are better than one.lets not be ignored

OP posts:
IceBearRocks · 28/12/2020 20:13

DS is Severely Disabled, Has Epilepsy, ASD and EDS. He is on the ECV list and I have been forced to send him to school, despite the fact the DS and DH are on ECV list.
This has annoyed me dramatically..... my DS needed to keep safe at home where I can easily provide him with the sensory diet he requires.
Government have decided he needs to be in school.
None of the Coivd situation is fair...we have had no overnight carers or hospice respite care since February.

Shallow07 · 28/12/2020 20:22

There is literally nothing I can say to be of comfort but I've read through all the posts here and my heart goes out to you. Really hoping Mumsnet can extend their existing campaign to bring this important issue to wider attention/get children (including grown up ones!) and families the help they deserve Flowers

justanotherkid · 28/12/2020 21:38

so i need to start fighting school again for a 'vulnerable childs place x2'

most people think all SEN children simply get one as the child is entitled

NOT SO

school here was due back on 4th...with an inset, so due in on 5th.
Now no school till 11th - except for keyworkers - and in small writing - vulnerable if school can accommodate.
my 2 both have 1:1s who should be available in the school building - they cannot access online learning and both have EHCPS.

in addition we have medical apps on 6th, 7th for other child, and EHCP review for other child on 8th!!! i cannot do this with the 2 in tow and am in tier 4
:(

perfectly reasonable to expect school to accomodate the 2, but they said no throughout the last lockdown!

and this is why we fight!

PivotPivotPivottt · 28/12/2020 21:53

I have not forgotten. I remember at the beginning of the first lockdown reading a thread posted by a lady in a very similar situation to you (maybe it was you?) and I felt so sorry for her and couldn't even begin to imagine how she coped. I think about her (and others in the same situation) often Flowers

Edel2019 · 28/12/2020 21:54

@MNHQ please acknowledge this thread