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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:
x2boys · 02/01/2021 19:07

My sons isn't either @boobybum they say they will be open to all by Thursday but who knows🤷

boobybum · 02/01/2021 19:17

I’m in the NE.
I’m annoyed with the school suggesting that it’s union and SAGE advice that they close as my understanding is that the union advice does not apply to special schools. In fact I think the unions have said that in the case of vulnerable kids (EHCP/SS involvement) that they be educated on site.
To be honest I wish the government would just let parents decide whether they want to send their kids in or not without the risk of fines (and for those parents who decide to keep them home to accept that there might not be any learning available).

Edgeoftheledge · 02/01/2021 19:22

It a throughly crap situation. My ds has autism too and we have found christmas hard.

x2boys · 02/01/2021 19:24

My son's school says it's so they can set up testing for COVID ,bearing this is a primary special school and it's only secondary school children that apparently need testing ,and all the children have complex learning disabilities and or autism so testing them is not going to be easy,makes me somewhat scepticalHmm

weepingwillow22 · 02/01/2021 19:41

My son's special needs school is not opening either due to the number of staff either already off with covid or testing positive for covid.

hiredandsqueak · 02/01/2021 19:51

@hibbledibble the generic special schools near us closed to all pupils from the week before lockdown and didn't open again until September. Our LA decided a weekly phone call from redeployed peripatetic teachers met their duty to children from these schools. Dd at independent specialist went to school throughout but I still got the weekly LA phone call.

x2boys · 02/01/2021 20:02

So true @hiredandsqueak my son goes to a genetic LEA special school and didn't attend school from march untill September I'm not blaming the school or the teachers they did their best under very difficult circumstances ,but some of my friends have children at independent specialist schools and their children attended school throughout the lockdown ,however these schools do cost the LEA a lot more money and some have some amazing facilities ,one of the many reasons why I'm trying to get my son in one of them for high school but it's going to be a fight .

x2boys · 02/01/2021 20:03

generic *

hiredandsqueak · 02/01/2021 20:11

@x2boys yes it was a fight for dd's place but I don't regret it for a minute. The pupils at the generic special schools appeared to have been forgotten, they received nothing from the school and a phone call from essentially a stranger once a week. Keyworker children could attend a hub at a different school but as you might imagine sending children to a strange school with people who are unknown to them was something parents didn't feel able to do.

bigbluebus · 02/01/2021 20:36

I really feel for all parents of children with SEN/disabilities during this pandemic. My DD sadly died 4 years ago and much as I miss her, I'm pretty sure that if she had still been around in 2020 the whole situation would probably have finished me off as well as her. She was in the ECV category so even if she could have still gone to her day placement (she'd left specialist school) there is no way I could have let her go as it would have been too risky for her. But with all carers and overnight respite cancelled I know I would have been at breaking point.
I have a number of friends whose DC have been (and still are ) shielding since the beginning of March and are really struggling.

x2boys · 02/01/2021 20:57

Yes it's awful @bigbluebus thankfully my child is very healthy despite his significant disabilities and I'm very grateful for that but it seems children in special school,s have been forgotten about

GinJeanie · 02/01/2021 21:22

@bigbluebus - am so sorry you lost your girl. Sending Flowers and a hug to you

bigbluebus · 02/01/2021 21:29

@GinJeanie Thank you.

Original poster
NotEver0 · 03/01/2021 03:29

@GinJeanie so sorry for your loss.xx
My sons school,also generic ,in Scotland is shut until the 18th definitely with a real possibility of a longer closure. Absolutely devastated,Christmas has been particularly tough this year as abandonment has really taken its toll.All kids in special schools should be treated equally regardless of their placing in private independent or state schools.Unions and Sage havent advised for Special schools to shut so why are the schools all taking this blind follow each other lead?A separate announcement for Special Schools needs to be made to clarify the situation. Nicola Sturgeon is on a competitive mission out doing Boris and is focused only on her sole aim in life,independence,what bloody hope have we??

OP posts:
omtotheg · 03/01/2021 03:47

I think about you and people like you all the time.

Where I live there is a fantastic special school close by where a relative is a teacher.

I often wonder how those parents are expected to just cope through this.

The children so used to their routine must struggle to adapt to the amount of changes.

The parents must be beyond exhausted.

You are truly amazing and so are those children

GinJeanie · 03/01/2021 07:57

@NotEver0 - sorry lovely but I think you meant that for @bigbluebus x

Sockwomble · 03/01/2021 09:13

Ds is nearly 16 and has sld and asd and is non verbal. His school remained open apart from short periods due to staffing. Even with that there has been increased anxiety leading to self injurious behaviour and attacking others. Even in 'calm' periods there has been hours of spitting at walls and vocal stimming. He has no understanding of what is going on.

If he hadn't have been able to access school I think we would have been looking at a residential placement for his own well being although that is not something we had planned for yet. I am worried that his mental health is deteriorating and with him being so close to adulthood this could massively effect where he is placed in the future.

We have told ss that he is not safe at home and school is the thing that is keeping him with us

berryfull · 03/01/2021 19:13

Bump

Original poster
NotEver0 · 03/01/2021 19:15

@MNHQ please get behind us

OP posts:
Original poster
NotEver0 · 03/01/2021 19:16

@ginjenie sorry, messaging at 4am doesnt make for good concentration!, @bigbluebus so sorry for your loss

OP posts:
PickAChew · 03/01/2021 19:24

Ds2 does have an ehcp and we've just got the news of his school opening being delayed for 2 weeks (and the rest, that'll be)

Like a pp, he's been so anxious about this happening that his tics have gone from intermittent to almost constant, over the past few months - his special school was closed all summer. He has just enough understanding and language to be very agitated that he's now not back to school on the 5th (very low functioning but a walking calendar)

berryfull · 03/01/2021 21:13

Bump

Yamayo · 03/01/2021 21:53

Thinking of you OP it is such an awful situation!
My son has severe autism and holidays are always especially hard.
Luckily he can deal with staying indoors and when he gets really stressed I take him out for a drive.

His SN school (Tier 4) is due to open (was meant to be Monday, then Tuesday, now Wednesday) but they have asked that all the children be tested and families too.
We are lucky that they have an amazing family liaison person who has been on phone/email/WhatsApp non stop from the 1st January throughout the weekend helping people book tests and generally supporting everyone.

My other 2 are home till 18th (at least) and having to deal with all 3 last lockdown was a nightmare.

It's such a stressful soul-destroying setup and no-one talks about it.

Original poster
NotEver0 · 04/01/2021 02:55

@Yamayo thank you.

Forums are choc full of parents with typical children finding this whole situation tough,little do many people know that for parents like us it's a whole another level of hard.
I looked at myself in the mirror today and I barely recognise the woman staring back.Our lives changed so much when my son was born and put so much strain on us mentally and physically, him going to school was the only thing that saved us.
The face looking back at me is so pained,pinched,drawn,my eyes are like tiny beads in enormous black saucers from little to no sleep and they carry permanent,ready tears waiting to flow at any moment. My body is a battle ground of scars,bite marks, scratches inflicted by my confused beautiful son who beats the door every morning waiting for his school bus which isnt coming and then attacks me in his confusion,anger and upset and cries until hes hoarse and cannot.My bones stick out from not getting a chance to eat or even sit down from constantly having to roam after my boy from room to room to keep him safe all the while attending to his every need,feeding him,cleaning him,changing his nappies at 10 years old.
My mind is another battleground altogether,one which has been medicated to the max since lockdown begun,I'd be here all night trying to detail how its affected it.
Thing is this is not just my reality,its the reality of millions of parents and carers with disabled children who have been let down and forgotten in this pandemic. Shame on you Britain.Im embarrassed to call you my home,look how badly you have treated your family.
#MNHQ HELP US

OP posts:
Kinny14 · 04/01/2021 06:01

I feel they have been totally forgotten about. Services are badly needed by both parents and users. The children need the structure of the service and are confused and upset and some don’t know how to express it. The parents are drained. We’ve had parents ring us crying to take their children. I’m in one of our residential houses and our children are not allowed outside apart from the tiny yard. It’s a form of abuse and it needs to stop now. So sorry you’re finding it hard. One of our children love the sensory touch of a large bean bag weighted on top of him for a few minutes and it calms him down. Take care