Feeing selfish and worried for the kids especially the disabled

[2littlledarlings]

feel really selfish and I know that I am going to sound it but I am wondering where the help is for families with disabled kids, (the schools aren’t open and offering places as it’s reported!)in today’s briefing there was a lot of emphasis
again on domestic abuse, I have a lot of sympathy for people in the situation but what about all the kids that have lost their structure and parents who have lost their only break! I am trying to home school 3 other kids, carry on going to work and deal with my eldest who has severe autism and learning difficulties, coz we cope and function ok we aren’t classed as vulnerable, sorry for long rant think I’m just fed up today, as everyone else is i am sure!

YANBU you must be exhausted. Pretty sure your eldest would be entitled to a school place during lockdown? Even if it was just a couple of days a week to give you a break? Also speak to work about what you're trying to juggle.

YANBU. It’s really, really shit. I don’t think people who aren’t caring for a disabled child have any idea how relentless it can be.

I hear you. I’m also alone with 4 kids, 2 with asd and learning disabilities. Im also trying to work. It’s a nightmare

In the same position OP - my son’s special school has shut to all children who don’t have key worker parents with no discussion at all. Every child in the school will have an EHCP and therefore qualifies under the government criteria. My DS mental health is really suffering and he’s self harming. All respite and any other help has been cancelled too. You’ll get flamed on here though because people will tell you that you need to keep your child at home without understanding how difficult it is to deal with a child with additional needs.

None of us would choose to be in this situation but it is what it is. I have a child with severe autism and learning difficulties - his school closed before the mainstream ones. His once a week activity has been stopped too but school and the LA have been as supportive as they can be in this situation. They have tried to prioritise respite for single-parent families which seems fair. My son misses school and I miss the break but his safety is the most important thing and I firmly believe that the safest place for him right now is home.

It's shit for most alot of families but more shit for some.

'Whataboutery' doesn't really apply when you're using it to complain about people suffering domestic abuse having more focus.

Of course it should. That doesn't mean your situation is great or you shouldn't have help but it's apples and oranges.

To be honest, most of the people I know with disabled children/young adults have kept their DCs at home before lockdown even started and have cancelled any carers that they did have to protect their DC. So I'm not sure what sort of help some of them could have.

I had a disabled DD who died a few years ago and I would have battened down the hatches big style to protect her. I know what it is like to be stuck in the house as I've done it many times when she was ill and I know it nearly drove me over the edge. But much as this time is difficult I think most families are too scared to accept any outside help.

Its beyond exhausting and he’s not sleeping, ended up blue lighted to hosp 3 weeks ago after a fit they think was caused by exhaustion, school know this and say it’s for everyone’s safety for him to be home, I get this! I am a key worker and he is in a specialist school but they made it clear they didn’t want him in unless I had no choice - which btw I fully understood and had made a choice to keep him at home for the initial 3 weeks for the safety of everyone and to do what the purpose of it was, decrease the spread. it looks good when they say all kids are in school that they think should be but it’s bs, my sons specialist school has 10 kids in, I can’t really say let him come as he’s struggling as all the others will be too🙄think the government have been a bit slow with the whole test thing etc too and that’s annoying as it means we all struggle for longer! My 5 yr old twins are asking when they can go back to school and I just say now when Boris decides and it could be whenever!

I know we have a separate hub in our area for pupils with additional support needs with the criteria for a place including - respite for parents

Apologies I missed your update - it sounds very difficult for you.

we get zero support or respite off anyone but that was the case anyway before a lock-down

we do home educate so dont have the stress of school on our backs expecting work done,we are also carers so dont have the stress of trying to work form home so i know a lot has it worse off,neither the less the kids are struggling

i have a 15 and 9 y old both need 24/7 care and supervision and have numerous separate disabilities each

our normal life is out somewhere every day,99% its in somewhere natureish or educational and we take regular(every 6 weeks)caravan holidays in a different place every time so are always exploring a new area this just stopped overnight

they do understand why but are feeling very caged in and are struggling without family,friends,new places to see and the home ed community we are very involved in,we also go to a disabled group which organize activities a few times a week,this have stopped as well

we have a small garden we cant use either so apart from walking the streets we are stuck in

neither sleep either so we are all up 24/7 so the days are long

If some people want to make the decision to keep their SEN children home, then that’s fine- their child, their decision. But if other parents feel it would be safer for their child to go in, then the government has offered that but schools are refusing pupils the opportunity to attend. My son has autism and extreme anxiety - this interruption to his routine could affect him for the rest of his life - I’m protecting my son by hoping he’ll soon attend school - he’s more at risk at home. Every situation is individual.

I'm in a similar position to you JJXM my dd has autism, learning difficulties, sensory processing disorder and extreme anxiety. Every day has been hell with her, she's self harming or lashing out at us, smashing things up, screaming and shouting from the moment she wakes up until she finally goes to sleep which we're lucky if it's before midnight. There is no help we are expected to just get on with it I'm terrified she's going to really hurt herself and she's become agoraphobic to the point she won't even play out in the back garden so I don't know how we will get her to school when they do open. I understand why the lockdown is in place but it's so hard when our children who rely so much on routines have that all taken away from them with no end in sight.

there is nothing. lone parent, working from home, I have 2 DC incl one with severe ASD and severe learning diffs. she has an EHCP but school won't take her. I am crumbling under the strain of caring, home schooling and WFH. nobody gives two hoots.

We took the decision to send DS9 with ASD back to school after Easter. Partly to do with the wording change and partly because not only is his school open, they are keeping them in their own classes with their own teaching staff and transport is still running. Approx 50% of the kids are back in. Three days a week is enough respite for us and DS5 who is NT. I feel blessed (and I hate that word with a passion) that our school are offering this as a positive step not an end of the line only if you are desparate thing. Our family's mental health was in tatters and now it isn't.

To be honest, most of the people I know with disabled children/young adults have kept their DCs at home before lockdown even started and have cancelled any carers that they did have to protect their DC. So I'm not sure what sort of help some of them could have.

it would help massively for those who are struggling to cope or parents who have to WFH to let children attend school if they have an EHCP as promised by the government. This is not happening.

YANBU OP or selfish.

DS school is SEN and all the kids have EHCPs btw hence why 50% of the kids are in.

I think it feels a bit shitty to admit that your child is safer in school if they have SEN. That is the wording in the government document. As an SEN parent, life is hard enough without being lumped in with drug addicts and people who neglect their children.