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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:
formerbabe · 22/12/2020 19:45

Oh gosh, I'm so sorry Flowers That sounds incredibly hard. Do you have a partner?

Meatbadger · 22/12/2020 19:47

You have my sympathy, for what it’s worth. People need to get their priorities straight if you ask me - surely we can all make an effort to minimise contact with other people over the next couple of weeks if it means keeping schools open in Jan?

Stormwhale · 22/12/2020 19:48

Honestly you haven't been forgotten by me. I have been thinking of you and others in your situation through this shitstorm. I am so sorry it is so hard right now, but we will all come out the other side and life will be bearable again in time. Sending you a hug and some well needed support.

OverTheRainbow88 · 22/12/2020 19:50

It’s not happening again, Maybe stop reading the news. I’m sorry you’re in such a tough situation, I feel for you. But life will get better

Original poster
NotEver0 · 22/12/2020 19:54

@Stormwhale thank you for being kind. I cant even turn the news on anymore its effecting me so badly.

OP posts:
Allhallowseve · 22/12/2020 20:00

So sorry your feeling like this . Your not forgotten I think about family's like you all the time throughout this . Be careful what you read on here . Nothing is happening yet with regards to schools . I'm hoping it will be different this time . We will get there this will get better x

Embracelife · 22/12/2020 20:00

Sympatjies.
You can have carers come to the house.
What respite apart from school did you have or do you have? How old?

fleurbelle · 22/12/2020 20:06

Oh lovely...you got it tough.
How old is he?
Can you across his personal budget to get some respite?
I'm a PA for young people with severe LD.
I'm sorry you are going through this 🥺

fleurbelle · 22/12/2020 20:06

*access

blissfulllife · 22/12/2020 20:14

I've been absolutely crucified by a fb group for writing a similar post today. By parents who should know how tough things are. I'm totally with you. Mines still not back at school as there wasn't a suitable special school put in place for her due to mistakes, incompetence and the pandemic holding things up (transferring from mainstream primary) I'm living on 3 hours sleep a night. I'm bruised and battered from her frustrations and I can't have family here for support. I too have had intrusive thoughts.

I don't listen to the news anymore. The media just seem to try and whip up fear. I pray that education,especially for special needs children continues for their sake as well as us as parents.

All I can advise it taking it day by day and try not too think ahead. We just end up frazzling our already fried brains with worry x

Original poster
NotEver0 · 22/12/2020 20:18

@blissfulllife I cant believe folk having an argument against families like ours.whats actually wrong with people?has covidis also robbed us of compassion and humanity?

OP posts:
Historydweeb · 22/12/2020 20:21

I'm so sorry, I pressed yabu by mistake and I can't recruit. YANBU

Emeraldshamrock · 22/12/2020 20:24

It is very tough OP.
Don't panic yet schools will stay open as long as possible and may not close at all.
In the meantime check if there are any respite services available for you for a small break at the weekends.

x2boys · 22/12/2020 20:24

Yes it's shit isn't it my severely Autistic son is in his last year of his special needsprimary school I have requested a non LEA school for high school which is going to be hard enough to fight for without COVID,when people talk about vulnerable children still going to school I think they forget about children in special school,s who can't go if it isn't open .

MrsJE · 22/12/2020 20:28

I totally and utterly agree with you.
I'm 50, I've raised my own 4 children then took on a little boy (family member) with FASD and ADHD.
I adore him but my god without school I was at breaking point and thinking I can't carry on.
He's a LAC & has an EHCP so in theory eligible to be in school full time during lockdown but in practise his mainstream school said they couldn't cope with him.
He has also been off self isolating on 3 separate occasions.
I can not cope with another school closure.

parrotonmyshoulder · 22/12/2020 20:33

We’ll be working hard to try to keep our special school open for children like yours. Last time, our head genuinely believed that he had to close to everyone. We began reopening fairly quickly for individuals but many families preferred to keep their children at home (and still have). Lots of special schools seemed to manage to stay open. It’s obviously even harder to mitigate any risk as there is no SD, little chance of PPE etc (as we need to see faces to communicate). I hope that your school is able to support.

BlueBoar · 22/12/2020 20:36

It’s super unfair on parents like you, OP. I work with children with severe autism and LDs; our school was open to the most challenging (without additional medical needs) children throughout (some on a part time basis, some were in every day from February to July, apart from the bank holidays). My friend is parent to a girl who sounds like your son and she chose to keep her off and at home as she was worried that her behaviours (spitting, mouthing, biting) would not keep her or the adults safe during the first lockdown - she even was on National radio and TV talking about the relentlessness of lockdown with a severely autistic but otherwise physically healthy child. It’s a worry for us in school, how our parents cope even during normal school holidays and our SLT do all they can to make sure people are getting respite support using PAs who are LSAs at school or holiday schemes and other centres. Can you, as a PP said, find out what support you are entitled to given that you must be on a higher level of DLA? We know how challenging it is to work with children like your son for 7 hours a day, but you have to live with it by yourself the other 17 hours, with a non sleeping and potentially unsafe child in the house. Nothing is set in stone and special schools are being mentioned as being in the group due to be tested - as it stands we will be open as usual on 4 January for all the children and if we have to do testing, we will manage it somehow. It would really make sense for us all to be vaccinated ASAP so we can carry on as normal, given the complex needs and behaviours and close proximity we work in with our young people- we have to do their personal care and feeding as well as give cuddles and work hand over hand and you can’t do that from 2m away.

Samcro · 22/12/2020 20:37

I really feel for you op, my child is now an adult and in residential,
But i have ofeten wondered how i would have managed if they were school age. The idea of no school or respite is just to awful to think about.
I think disabled children and adults have been really let down.
My dd has not had a hug for months or been properly out.
Awful.
Sending love

AgnesNaismith · 22/12/2020 20:38

I’m so sorry OP, that is horrifically hard on you both.

My db has DS and was sent home to be with my dm in the first lockdown, after years of living in his own home with carers. I can’t help but I can say it’s not ok, not acceptable at all and you’re fully justified in feeling how you do. It did feel like children and adults with disabilities have been forgotten. We’ve been told services are to stay open this time..I know it’s no guarantee with this government but I hope so.

justanotherkid · 22/12/2020 20:40

i desperately needed my 4 sen adopted children to be in school - but the private school could not take my 2 so online home learning it was...and the other 2 were offered hub places months into lockdown but for afternoons only - of course i could not get them there as the 2 home learning could not be left alone in the house......what a shit show.
dreading it happening again
1 month xmas break is hard enough.

when i mention it people act like i'm mad wanting them in school :(

disabled kids and their carers are the most forgotten....i shielded DC in the first lockdown but somehow fall through the gap for the vaccine too.

x2boys · 22/12/2020 20:40

Genuine question @BlueBoar how do you deceide which children are the most challenging ? My son goes to a special school for children with autism and or complex learning disabilities so to be fair they are all challenging.

MoMuntervary · 22/12/2020 20:41

You're not forgotten by me. That sounds so hard and I'm so sorry you had to manage. Bloody well done for getting both of you through it. If schools close, please talk to yours straight away about what you experiences were last time and how concerned you are. I know special schools in my LA had a few non-keyworker families back part-time to give parents some much-needed respite Flowers

BlueBoar · 22/12/2020 20:48

I don’t decide! SLT have that burden. It seemed as though it was the SLD children, the CLA children and those under some sort of CIN plan who were in. We are a generic special school with many children who are able to cope with home school though.

x2boys · 22/12/2020 20:51

Thanks @BlueBoar sorry I wasn't being arsey just wondering .

BlueBoar · 22/12/2020 20:51

Quite a few parents chose to keep their children at home in lockdown 1 but we have had pretty much expected attendance since September throughout.