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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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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:

x2boys · 05/01/2021 12:53

I'm waiting to hear from my son's special school ,I also think there is an issue with school transport ,which complicates things

Mrsfrumble · 05/01/2021 13:53

Thank you @beldaran. That’s really helpful. I think that DS meets 2 of the criteria.

He just can’t do what the school are asking from him It’s our first day of remote learning and I’ve already had to message his teacher and tell them we can’t do it I feel like such a failure.

PennineSpring · 05/01/2021 14:53

We've just been told our school will shut from tomorrow and to expect a home call from the pastoral staff tomorrow.

AliceBlueGown · 05/01/2021 15:25

I just wanted to add my support to this thread. My son is older (17) and luckily his college is open for him to attend (as is another further education college locally). He has a EHCP and is delighted to be back. When he was in school last lockdown it closed immediately and offered us a fortnightly phone call. Takling to my sons social worker this morning all the local special schools and units (attached to mainstream) are closed again. I really feel for all parents and children in this position.

Original poster

NotEver0 · 06/01/2021 04:23

Bump
Hope you are all holding up my fellow mums in need.im up unable to sleep ,my son fell asleep earlier today for a change but years of continued disrupted sleep and worry about my boy has left me with insomnia and this often means I'm sleeping barely for more than an hour at least a few nights a week.if ever asked I often get asked how i manage and told I'm amazing,I'm really not and I've no option other than to manage.Id never abandon him,I dont judge anyone who has gone down that path,my god I've been there many times in my head, but I'm such a victim of my mind that I'd never be able to live without him.id worry to death about him.literally!.
Sorry I'm off on a tangent,lack of sleep clearly makes me too thoughtful!
My sons headteacher is letting us know if theres any plans of a hub,if its allowed and who would be prioritised.shes said it wont be exclusive to key workers children and understands every child at his special needs school is vulnerable, hallelujah some who gets it!I'll update when I hear more,please all if you wish say a prayer or send good thoughts for my boy to get a space,this boy who hasnt stopped banging the front door awaiting for his school bus.
Good night,good morning allxx

OP posts:

flapjackfairy · 06/01/2021 04:48

@Notever0
It is horrendous isn't it.
I have a 14yrold foster child with medical needs , learning disabilities and autism and worst of all challenging behaviour.
We also have our 6 Yr old with v complex needs who needs medical interventions around the clock. Hence my also being up at this hour. Like you sleep is in v short supply.
We cannot send the older one to school even when it is open because the youngest is too vulnerable so we are stuck in this endless groundhog day of being stuck at home. 10 months and counting of caring round the clock with no respite. We did send the elder one for a couple of weeks in Sept when cases were low but that has been it .
I was doing OK until this last few days but I can't see any end to this for us because they are not even going to vaccinate children! We feel like we will never have any kind if life again.

SoNotRainbowRhythms · 06/01/2021 04:51

Hi @NotEver0 i am awake. So is my son. I don't think he has a place in school but I don't think he could go anyway as he's pretty much nocturnal right now. there is no way hel l be awake at 8.30. The last term he loves school as always but refuses to get on his school bus and I don't have a car to take him. We are in Wales back on 18th. To be honest I can't see them going back in 18th...

CupOfTeaAlonePlease · 06/01/2021 05:30

I have a deaf child. He's fine because we all use sign language at home, but I am so sad for the signing children whose parents and siblings have not learned to sign. You would be shocked at how common that situation is.

Nameandgamechange123 · 06/01/2021 07:36

kids can go to school if they have a mild learning difficulty or EHCP but they can't go to school if they are severely disabled. It doesn't make sense.

5zeds · 06/01/2021 09:07

By definition your difficulties aren’t “mild” if you have an ehcp.

Spikeyball · 06/01/2021 09:25

The problem is that a child with an ehcp getting a place in their school seems to be mainly dependent upon which individual school they go to and that is not been acknowledged by those in power.

If a school says no you can go to the LA directly but they will then place your child in any school which isn't going to work with lots of children.

PennineSpring · 06/01/2021 09:27

Hi Notever How are you this morning. I was up at 2am with my DD. She was happily bouncing on her bed and singing. Needless to say I wasn’t that happy.

School has closed and we’re waiting for a phone call today from the pastoral teacher when school have made a decision on what they are doing.
I’m in a local group for parents of children with ASD and it’s quite depressing to see all the kids in mainstream school with an EHC plan being offered places when special school have closed their doors to us.

Boulshired · 06/01/2021 11:05

DS2 school at present cannot guarantee key worker, they are asking for families to utilise family/ friend support bubbles. They have stated that along with those shielding, isolating and they also have staff exercising their right under section 44 of employment rights and are not coming in. I completely understand this, I know the difficulties and believe special school should be classed in the same way as care homes in regards to vaccinations. But what I am extremely furious with is the constant lies of children with ECHPs having a place if they want one.

x2boys · 06/01/2021 11:31

Yes sick and tired of constantly being told children with EHCP,s can attend school it's just not the case

PennineSpring · 06/01/2021 11:45

Schools have rung. Apparently special schools now have a legal obligation to provide education for children with ECH plans, which is a change from March. I suppose this means in school or online.
Hopefully this info will help parents challenge school if they feel they are not providing what they need.

x2boys · 06/01/2021 11:59

We are getting daily zoom meeting,s and a weekly door step visit and phonecall ,so it's not ideal but better than nothing

Boulshired · 06/01/2021 12:21

I think DS2 school have over stepped with their letter as social services have got involved as they are phoning parents to confirm we have seen the letter. The school have now retracted and have informed they are back in talks with the local authority. Still shut to all whilst this is ongoing. It’s catch 22 for us, DS2 needs high levels of supervision and needed a reduced timetable in September due to violence after going back, but equally I worry for his care givers and I dislike the idea of sending him somewhere he is not wanted.

Mrsfrumble · 06/01/2021 13:47

I know the difficulties and believe special school should be classed in the same way as care homes in regards to vaccinations

^^ 100% agree

hennaoj · 06/01/2021 18:21

@newyeary

Ours has closed as well. Back to worksheets that won't be looked at.

Does anyone know where we stand with EHCP legalities? The rights were suspended up to September but now they have a legal right to their EHCP contents again. How can they receive it at home? Mine sons has endless therapies in.

The EHC's are in full force. In fact by not allowing children to attend the schools named on their EHCP, the law is being broken. If the school won't let your child(ren) attend, contact your local authority as they are responsible for EHC's being enforced. If that doesn't work you can start a SEN tribunal.

Dowser · 06/01/2021 18:30

[quote NotEver0]@Stormwhale thank you for being kind. I cant even turn the news on anymore its effecting me so badly.[/quote]
Never watched the news in over a year...don’t watch it, it’s Poison.
I’m so sorry.

I have several friends whose children were as you described. They’ll be adults now but I expect services have still been cut.
It’s just awful.
So many groups of people have been chucked under a bus.

It’s terrible. It really is.
These policy makers have blood on their hands
No two ways about it

islockdownoveryet · 06/01/2021 18:44

@NotEver0

Bump Hope you are all holding up my fellow mums in need.im up unable to sleep ,my son fell asleep earlier today for a change but years of continued disrupted sleep and worry about my boy has left me with insomnia and this often means I'm sleeping barely for more than an hour at least a few nights a week.if ever asked I often get asked how i manage and told I'm amazing,I'm really not and I've no option other than to manage.Id never abandon him,I dont judge anyone who has gone down that path,my god I've been there many times in my head, but I'm such a victim of my mind that I'd never be able to live without him.id worry to death about him.literally!. Sorry I'm off on a tangent,lack of sleep clearly makes me too thoughtful! My sons headteacher is letting us know if theres any plans of a hub,if its allowed and who would be prioritised.shes said it wont be exclusive to key workers children and understands every child at his special needs school is vulnerable, hallelujah some who gets it!I'll update when I hear more,please all if you wish say a prayer or send good thoughts for my boy to get a space,this boy who hasnt stopped banging the front door awaiting for his school bus.

Good night,good morning allxx

Op hope you get your dc into school . I spoke to my dc school yesterday I simply said dc needs the structure and routine which they agreed. Dh is key worker and I wfh luckily dc has been really good when he’s been home , but full time I really wouldn’t be able to cope . School have agreed that he can go in some days which is fantastic. I said I really don’t think sen schools should be shut they are much smaller classes for a start but they really are needed . I know all schools are I’m just saying remote learning is impossible . I also said the same they are vulnerable and that’s what the government has said so it’s not wrong to allow them to come in as long as they are not shielding.

PhoebeSnow · 06/01/2021 18:49

@NotEver0

Bump Hope you are all holding up my fellow mums in need.im up unable to sleep ,my son fell asleep earlier today for a change but years of continued disrupted sleep and worry about my boy has left me with insomnia and this often means I'm sleeping barely for more than an hour at least a few nights a week.if ever asked I often get asked how i manage and told I'm amazing,I'm really not and I've no option other than to manage.Id never abandon him,I dont judge anyone who has gone down that path,my god I've been there many times in my head, but I'm such a victim of my mind that I'd never be able to live without him.id worry to death about him.literally!. Sorry I'm off on a tangent,lack of sleep clearly makes me too thoughtful! My sons headteacher is letting us know if theres any plans of a hub,if its allowed and who would be prioritised.shes said it wont be exclusive to key workers children and understands every child at his special needs school is vulnerable, hallelujah some who gets it!I'll update when I hear more,please all if you wish say a prayer or send good thoughts for my boy to get a space,this boy who hasnt stopped banging the front door awaiting for his school bus.

Good night,good morning allxx

How are you this evening NotEver? I hope you have some rest and things are better for you and your son. Lots of good wishes going out to you for good news

beldaran · 06/01/2021 19:34

I don't know if this will help anyone at all but this is from Hansard of questions following today's statement by Gavin Williamson.

DDs school have let us know that it is parental choice as to whether we send them in or not, they will support either way and that staffing levels will be the only variable but they will be testing staff weekly.

Disabled kids,the forgotten Covid victims

hiredandsqueak · 06/01/2021 21:52

Advice here on what to do if your child has an EHCP and you want them in school.

OHolyTights · 07/01/2021 10:47

Bump

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