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 know how you feel op. My son is also severely autistic and the impact of covid on his life has been horrendous. I cry every day in the hope that someone will do something to help the struggles we are facing. Our children are being failed, it is disgusting.

@OverTheRainbow88 it is happening again. I'm in Scotland and school are closed after Christmas allegedly until 18th January but the general consensus is it will be until Easter.

I M in exactly the same situation OP and could have written your post word for word. I am stuck here with no friends or family and honestly don't know how I am going to cope. Please feel free to message me if you want to.

"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.*"
*
This. I have been trying to get this message across to HC professionals. Because they are young, we are told they will fair better with Covid than adults who have no underlying health conditions. So my Mum gets a vaccine before my young sons, one of who has two autoimmune diseases. That makes me mad (my Mum is horrible too so I really resent it ).

@MNHQ, this is the reality of having SN children with severe and complex needs In the pandemic. It’s an issue that, as OP says, has in the main been ignored - by government and the media. MN could do something so valuable here.

@SparklingLime

Agree it would be an excellent idea for *@MNHQ* to look at the whole issue of what is happening to SN children and their parents during COVID.

a few years back mn hq did a campaign. this is my child I think. it was not nice as people like me were not include as my child was over 18. it is not just children that are missing out. my dd is in her 20's and her life has been dreadful.please make it for all disabled people.

I feel for you OP. My DS has ADHD and I'm okay when I get the respite of school (even though it's still extremely hard and we're awake into the early hours) but as he doesn't have an ehcp yet - newly 'officially' diagnosed but I'll be honest hes textbook and there have been signs since he was born! - not classed as needing to be in. School were really helpful in getting a diagnosis but no help in getting an ehcp as they don't want to fund the support they know he needs, and certainly no help in supporting me with the condition and repercussions. I really struggled as for DS knowing what is going on and that consistency, stability and a strict schedule really helps. No partner, DS dad 70 miles away. Can't really afford respite care if they're even doing it at the moment. Have to wait to see if now with diagnosis he's approved for disability benefits I suppose.

I think there are all kinds of anomalies......
mine have ehcps (and are previously LAC ) so are vulnerable, but because I fought and fought for a good school - which happens to be independent (no state could cope with them) the school is then shut and I am up the creek without a placement in lockdown as they are then illegible to attend the local hub - bonkers!!!!

the vaccine makes no sense - oh we know all the shielded kids out there should be priotiotized (well their parents/carers), but we're going to pretend they don't exist and expect them to be last in the queue with the rest of the population......but do the 80s/70s/60s/50s first......wtf???? 146 days I shielded a 4 year old...and I cannot have a vaccine to try and protect them!

the shielded and disabled kiddies really have been forgotten :(

What has not helped was the constant briefings that vulnerable children had a school place and including disabled children in that group. To the point people actually believed disabled children were getting an advantage. Special school stayed open where I am during the first lockdown but only for front line NHS as that took all the allocation. DS2 has on paper a really good respite package it’s now upto 40 overnight stays a year, the reality is he has had 6 nights in total in the last 20 months and I had to collect him on four of the six, with four different providers.

Bump! And huge sympathy OP. PPs are right that the general public seem to believe that all children with disabilities and SN were covered by the “vulnerable” category in the last lockdown and were able to go to school, but this thread shows how many were let down.
DS had ASD and ADHD and does well in mainstream so has no EHCP. But home / online learning does not work for him. He can’t cope with the boundary between school and home disappearing and the uncertainty of the situation sends his anxiety through the roof and makes his behaviour much more challenging. Our situation is not as difficult as some of the posters here, but it still breaks my heart to see how the academic and social progress he should have been making disappears down the drain while the government can pay themselves on the back because they’ve fooled people into believing that all “vulnerable” children have been provided for.

like fuck they have Mrsfumble... as we know.
(for calrity agreeing with you but I am too tired to work out whether this is waht my post actually seems to say to others.)

4 am asleep. by the time I had settled the one awake I had missed the window where I am sleepy. so was awake longer. also it takes a while for adrenaline to get out of the system.

@MNHQ please back a campaign to help.you have the voice,the platform, please make a difference

Just received gift cards from the winter covid grant for vulnerable families. There was obviously not enough time to do this fairly and whilst my child is vulnerable he is not vulnerable to lack of food and heating. It’s blanket policy of lumping people together. Everything last minute with no so much unintended consequences.

Bumping...

The school's will stay open Op for vulnerable children.
Don't despair
Ignore those calling for schools to close, they clearly don't have a clue!

They will stop open for vulnerable children.
If you need the respite, then just keep sending your son in.
He'll be okay.

Yes i understand this feeling. My son is ASD and ADHD and dyslexic. And him missing school has such a huge impact on him, he can't read or write at nearly 7 and just can't afford to miss school. The lack of routine doesn't do him well. And not to mention i suspected his sister is either ASD or ADD, she's the one that doesn't sleep!

The arguing, lack of space and emotional outbursts is exhausting. Not to mention being a single parent and we've no garden to escape to, the first lock down was horrendous. My mental health plummeted and can honestly say i really couldn't see a way out of it. I can't face the idea of it happening all over again

I work in a Special school that offers residential care to the children with the most severe needs, some of them stay all week.The residential unit stayed open all through lockdown. Might be worth looking into if you could get something like that ?

@MrsMomoa

The school's will stay open Op for vulnerable children. Don't despair Ignore those calling for schools to close, they clearly don't have a clue!

They will stop open for vulnerable children.
If you need the respite, then just keep sending your son in.
He'll be okay.

If there was another lockdown with schools closing. The transport service will be cancelled and if you bring your child to school they will not be accepted. You really cannot just send them in if the school does not have a place or staff. DS2 is 1:1 in classroom and 2:1 in transition and outside. I would need the staff to collect him and would be physically assaulted if they didn’t. As it is he has been removed from school for his own safety whilst they secure all the fences. He had a near miss and caused a car to crash early December.

There's a link to a government petition in the petitions board to allow families with disabled children over the age of 5 to form a support bubble. It's disgusting that we can't if they have two adults in a household. The current ruling doesn't allow for the fact that one or more of the adults may be attempting to work from home, there may be more than one disabled child in a property, children's needs don't magically become easier at the age of 5 and in fact some become harder.

YANBU, OP. It’s been absolutely horrendous.
My daughter has DS, ASD and suspected ADHD, plus physical disabilities. She really, really needs the routine of school, and her behaviour, which was already very challenging, went sharply downhill during the lockdown. We were on our knees.

DD’s school eventually took her for 2 mornings a week, but only because I’m classed as a key worker. If schools shut again, I honestly don’t know how we would cope.

@MrsMomoa

the schools should stay open for vunerable children yes

the point is THEY ARE NOT

I teach ASN in Scotland and we are open full time from the 7th for our kids.
We wantbto support our kids and tbeir families as much as we can and are over the moon with this decision. There may be bumps along the way, staff who are very high risk, transport risk assessments etc but we will do our best to resolve and overcome.
Because school staff have no priority fro vaccine (because others are in more need) it means that some of our at risk adults and children are not safe in schools which is heartbreaking as we truly want to keep the continuity for all our kids.
I hope all your children can get to school and they get this virus under control again. I also hope investment in asn and ss is forthcoming so we can support our children and famies better.

@EachDubh I feel the exact same delighted we can have all our children in from the 6th in our case but worried about staffing levels if some staff have to shield as were short staffed as it is.

Only problem is I have 4DC of my own and they will be at home with my DH who is WFH FT and will have to homeschool/look after them. If it’s only an extra week he can use some holiday but not if it mainstream is closed any longer.

@EachDubh I'm also in Scotland and thus far have been told schools are closed until 18th with a real likely view of shutting till early spring.even writing this makes me shake with anxiety and dread
I wish my child was as fortunate to be at a school which had taken the same decision as yours to remain open
Schools are a vital lifeline for families like mine.i feel so passionate about how poorly families in my position are constantly treated, having to fight for every service and so called right.despite my son being severely autistic with learning disabilities and diagnosed at 2 I still had to fight for a social disability assessment for respite funding.this is contrary to the law stating that all disabled kids have the right to be assessed without argument.

Now yet again we are being failed,forgotten and having to fight.

@NotEver0 it’s the Scottish Government that have made the decision that our ASN schools will stay open and parents will decide whether to send their children or not. I would like to see teachers tested or vaccinated then so parents don’t have to make difficult choices. I had parents crying down the phone at me last lockdown at the end of their tether, hubs weren’t deemed unsuitable for their child, nowhere for them to go it was heartbreaking. Best place is at school but as safe as possible.

NotEver0
Do you mind me asking what authority you are? Please don't reply if it makes you feel uncomfortable. Did your school close this week or last Friday? We closed Tuesday so were able to put plans in 0lace and notify parents, perhaps some authorities that closed last week may not have been able to do that yet? Fingers crossed for you.
Our school, mainstream with asn attached if looking at 18th as being our aim to have the whole school back, we haven't even diacussed potential blended it is hoped, and no other indications from government, that we will back then. It really is to give 2 weeks clear from fesivities and social mixing, because it does travel through all schools and then we would close 😢 please don't make yourself sick and know the staff in the school will all be desperate to have everyone back. We love you kids and we are very aware of change and the impact for yourselves, your kids and on school. Sending you confort and hope.
sweetkitty my kids will be with grandparents all in 70s and 80s so I am convincing myself it will the 18th they are back because my workload is high just now and it will be me who home schools after school or weekends 😂 all the best 👍