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.

I have a child with severe needs and ASD. I have been thinking about if schools closed and he couldn't go in I was daydreaming about being drunk 24/7 but in reality I wouldnt, it's a nice daydream.

My son is in private SEN school and like every thing life is better where there is cash. He went back full time in April as soon as the DFE said vulnerable kids had to be in school.

I could say I'm lucky but it wasnt luck, I did lots of appeals to get out of the state SEN system.

Please do tell school. If it's a SEN school they will get this. Mainstream is another matter

justanotherkid

@MrsMomoa

the schools should stay open for vunerable children yes

the point is THEY ARE NOT

Well some ARE.
Mine has never shut.
They were open throughout the very first lockdown.
They were told by the government that they had to stay open!

Op I can understand how you feel. I have two with autism and it’s hard. My two got to mainstream. After the schools shut last time I was told they could go in (they have ehcps) but I decided against it and kept them home until July for various reasons (one being their actual school wasn’t open March-June, it was in fact a partner school children went to). If the schools close and my children’s actual school is open, I would send them if I could. My son took a long time to settle back into school. He’d be outside on the grass lying refusing to go in, screaming, kicking every day for a few weeks. It was taking me an hour to get him in as school weren’t allowed to Intervene and pick him up themselves. I don’t want to go through that again and I don’t think the school would either.

I don’t think anyone understands how hard it is unless they’ve been through it. It’s gruelling at home.

Hugs 🤗 I’m hoping it won’t come to school shutting!

I hear you OP. I am dreading January. My 10 year old son is severely autistic and I find it impossible to home school him as I also have a 13 month old to look after. He doesn't sleep, he came in my bed last night and then had an accident and I have been up since 3am just waiting for the baby to wake.

My husband is working overseas and I am meant to be returning to work after maternity leave. There is no one I can bubble with as our families all live 100+ miles away. No idea how I will cope if schools close again. I expect I will have to give up my job which is the only thing which has kept me sane for the last 10 years.

You are not alone OP.

We are in the same boat and were stuck at home with an aggressive and destructive little boy with ASD who was made worse by not getting his sensory therapies that school provide.

The constant guilt about not being able to give my girls the help they needed with home schooling and them now being behind as a result.

It was just so unbearably shit and I had some very dark thoughts but somehow got through it but I do not think I can do it a second time.

My sons school was shut march to mid August
I cannot understand how this was allowed.
I work in a state secondary (U.K.) and we were open to vulnerable students, those with EHCPs and key workers children.
Why on earth was your DC’s place closed completely?

Worker’s

@Goodbye2020Hello2021

My sons school was shut march to mid August I cannot understand how this was allowed. I work in a state secondary (U.K.) and we were open to vulnerable students, those with EHCPs and key workers children. Why on earth was your DC’s place closed completely?

Our DS special school also closed despite the fact that all the children have EHCP. They opened again after May half term but only took each child 1 day a week.

I'm not sure on the legalities of if but it was definitely commonplace

State secondary and special schools were completely different in the first lockdown down. DS2 special school stayed open but they lost the majority of school transport escorts to shielding. They also lost school staff to shielding. Every child in DS2 special school is classed as vulnerable and they could not run fully March to August on reduced staffing. They only excepted frontline NHS key workers although never stated a few children who were seen to be extremely vulnerable or parents themselves were disabled/vulnerable.

I can understand these schools running differently (eg full time provision reduced drastically due to staffing shortages) but cannot understand why they would close completely. We didn’t. Our comprehensive was open and we had children attending every day.

Special schools in my London borough were definitely closed, with no suitable alternative provision provided.

Not in your position and sending love and support to all who are @MNHQ please increase the 'this is my child' campaign by adding this issue.

I can’t handle another lockdown with schools shut. My husband just shut the door of his office and left me to it with three kids - two have asd and adhd (the youngest is in a Sen school as he has extremely complex special needs). None were able to go to school despite having ehcps and my youngest is in a specialist school. He was offered two days at the end of July. I was working part time and it very nearly broke me. School is our only respite so it was exhausting. We’ve been completely forgotten. It’s horrible. I’ve never felt so utterly lonely.

Teenager is due back in school on the 11th, middle child with Sen is due back 5th jan but I suspect that will change and youngest’s special school have said they’ll be opening as usual on 5th Jan. I really hope so. It’s my youngest who is the most difficult.

Because having a few vulnerable children with EHCP,s able to attend their mainstream school is a very different scenario. to having every child attend their special school @Goodbye2020Hello2021, there is over 200 pupils at my son's special school all of whom are vulnerable and all of whom have an EHCP.

I hear you.

Single parent. 2 autistic children, 1 with complex medical needs meaning they remain on the shielding list despite all the guff about children not being severely affected.

No school from March to September (yes, yes, EHCP. Yes, special school was open. But, could only offer any non-keyworker child 2 part days a week, as every single child in the school counts as vulnerable and there simply wasn’t capacity. Plus, shielding, so advice was no school.). No respite. No carers for a long time then minimal carers. No hospice.

We go back to shielding from the 26th. So no school.

Clinically extremely vulnerable will be vaccinated. Except not children, not the “very few” children who remain on the CEV list. And who knows about unpaid carers?

I don’t see a way out of this one.

@MNHQ bumping for help

To all of the parents in this situation with me,I hear you, together we must stand to try change things please bump this thread and ask for them to advocate a campaign of change

So many for everyone in this situation. I totally agree that it's unacceptable for children and young adults with SN to lose their provision.
I agree that these children who attend, and the staff who work in special schools should have access to vaccinations earlier. I work in a special school and it's terrifying. We have pupils in who have underlying health conditions - nobody knows if they would be alright if the contracted Covid. I know their families worry about this too - all the time - but are torn.
We've had a proportionally higher number of cases than local mainstream schools.
Staff have caught it from students and bubbles have burst across the school meaning students get sent home. Very occasionally, challenging behaviour of children means staff get bitten or spat at. We get coughed and sneezed on and aren't allowed to wear masks in class. One staff member who is clinically vulnerable managed to get it and is luckily ok. My DH is CEV with previous lung damage and I am terrified I'll pass it to him. He's due the vaccine around March all being well and it can't come soon enough!
We need to be vaccinated so we can keep open. Take care all

Ds could have gone to school but he was shielding so we had to balance needs. When he had to shield again last lockdown his 1-1 taught him virtually via teams which I was exceptionally greaful for; it meant I could at least have a hot drink while he worked.

Other other issue has been the massive knock on onto his medical treatment. He has been 9 months without the specially made lycra suit he wears so has lost so much of what had been gained from having it. Even getting his moulded insoles took 6 months and the damage from not having them is meaning splints are looking more likely.

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

Bumping...

I can't imagine what its like to be the parent of a disabled child really, but all the disabled community has been left to rot really during Covid... unfortunately us disabled adults are pretty much used to this, once you stop being a disabled child, no one wants to know (seriously, go look for charities doing stuff for disabled kids, now look for ones doing stuff for disabled adults.. poof... all gone)..

A fuss... no, a MASSIVE STINK needs to be made - this country cruises along putting the weight of caring for the disabled, whether they are children, adults, whatever, onto relatives, friends, community - saving themselves BILLIONS in the process.

Covid comes along, care is cut, services cut, and we are made to feel like we are not worth anything, if the disabled die, ah well... if theres no support for carers.. ah well...

And it goes on, because we, the disabled adults, the disabled children and the carers/parents of both are the LEAST able to make demands, make a fuss, stand up and be counted, we are too busy trying to stay alive!

I agree it’s awful for the whole disabled community and their care givers. My dad has been pretty much stuck in bed since March in pain, but because they have ruled out cancer (thankfully) he isn’t a priority for the operation he needs to help and his consultant now gets given 3 theatre slots a week instead of 30 so you can imagine what’s happened to his waiting list!

Yanbu. I have 4 disabled children and 1 without although not as severe as yours. I'm fed up of everything and scared about how we would manage if I got covid. I have probably left the house less than 10 times since March. I had my 3 eldest at home March to September and my younger 2 were only able to go to school twice a week for the last month of the summer term. This term my dc2 has has to isolate for 4 weeks and dc1 has isolated for 2. Dc4 has had 4 medical appointments and been sent home from school 5 times for incontinence, reflux and bumping his head. He was meant to have had an ehcp by now but it's only just been applied for because of covid.

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 have nothing of any use to add as I have no idea about the realities of life with a SN child, however I am thinking of you and wish you the best ❤

@Rudolph98

Op I can understand how you feel. I have two with autism and it’s hard. My two got to mainstream. After the schools shut last time I was told they could go in (they have ehcps) but I decided against it and kept them home until July for various reasons (one being their actual school wasn’t open March-June, it was in fact a partner school children went to). If the schools close and my children’s actual school is open, I would send them if I could. My son took a long time to settle back into school. He’d be outside on the grass lying refusing to go in, screaming, kicking every day for a few weeks. It was taking me an hour to get him in as school weren’t allowed to Intervene and pick him up themselves. I don’t want to go through that again and I don’t think the school would either.

I don’t think anyone understands how hard it is unless they’ve been through it. It’s gruelling at home.

Hugs 🤗 I’m hoping it won’t come to school shutting!

Same situation with our mainstream primary. DC'S school closed during first lockdown. Offered an EHCP place at a partner school with "1:1 support where possible from a variety of staff". Completely unsuitable for a child with asd who has full time 1:1 and was already struggling with school refusal

I get so annoyed when people parrot the "EHCP had places in school". Noone I know with a child with SEND (at a few LAs) was at school during lockdown whether special, independent or mainstream. I'm expecting more of the same if there's another set of closures as there's no interest in funding this.