Has anyone else reached the end of their ability to cope?

[SinkGirl]

I honestly feel like I just can’t carry on any more, I’ve been trying to just push through and keep going but it’s like I’ve suddenly lost the ability to cope.

Our twins have been at home 24/7 since March. They are both autistic, amongst other things, they are nearly 4. They are non verbal and delayed in every area except gross motor skills - their play skills are really delayed, and they have a lot of sensory issues. We can’t do the sort of activities others can do and they’ve gradually become less interested in toys throughout and increasingly screen addicted and the days are just like Groundhog Day. We’ve had no real input from any of their professionals as they don’t respond to video calls so I’ve just been trying to manage myself and I’ve completely failed.

One of them sleeps very badly and we had a really stressful time early in lockdown where one managed to get out of his bed and got hurt so I had to sort out a loan of specialist safe beds from a charity. He still doesn’t sleep but at least I know he’s safe.

I’ve been trying to manage them alongside my job which is part time but has been really stressful during COVID and isn’t likely to get easier any time soon.

On top of this I’ve been trying to manage tribunals for both twins EHCPs. I’ve been thrown into a world I had no idea existed and it’s so much more awful than I could imagine. The lying, gaslighting and ignoring the law is so shocking. I think we are going to win but not before I spend several more grand that shouldn’t be necessary given they have a shitty case. I did a load of SEN legal training online during lockdown so I know what I need to do, but it’s absolutely relentless and it’s breaking me.

They haven’t been able to go back to nursery for quite complicated reasons but those are getting sorted (slowly). They were able to go in on Monday for three hours and I thought that would make me feel better and I don’t know why but now I feel worse than ever.

Some of my friends are going out for dinner tomorrow and have invited me. I can’t face it. I don’t know how I’ll have a conversation without falling apart completely. I can’t even write this out without crying.

My DH is doing everything he can, giving me a break at weekends, doing the cooking, etc etc but he is so busy with work and he’s feeling really low himself. We are both really broken down.

Don’t even know why I’m posting - I just feel so fucking lonely. My friends are lovely but they don’t understand what it’s like and I don’t want to be that friend who is just a bloody misery all the time so I try not talk about it. I’m seeing all their kids grow up and change and my boys are just stuck and I can’t really explain to them what it’s like.

I just need a proper break - I have some health issues myself and the stress is making it all much worse - but I can’t have one and won’t for some time. I know I need to find a way to just suck it up and keep going.

Are other people feeling like this? Has anything helped?

Sorry for moaning.

@SinkGirl

Have you considered finding a therapist - as safe space - just to offload this on a regular basis?

The general public would be appalled if they knew just how much LAs waste defending cases they know they aren't going to win. At least I hope they would, but nothing would surprise me now.

I’m sure they would be - unless it’s child protection -then it’s a parent in denial/lying/mentally unwell (or that’s certainly what I’ve seen here in MN) - it’s incredibly isolating and a very hidden problem. ‘Child protection’ is a shield from proper scrutiny an excuse for abuse of power.

Thanks all. I have spoken to my closest friend in the group and she’s coming to get me and take me out later. Will see how it goes. I probably could do with some counselling honestly, I can’t carry on keeping it all bottled up.

No I haven’t had a carers assessment. They didn’t do a social care assessment at all as part of the process - now they’ve done a half arsed one but it’s mostly nonsense.

We have good evidence for the appeal from an independent EP who’s very experienced, and says that the LA school can’t meet their needs. They’re all refusing to put full time 1:1 in the plans even though we have evidence they need it and they’ve specifically agreed to fund this for their nursery, because if they agree it would mean their school would cost more than ours. Completely unethical and transparent, I hope the judge rips them a new one.

I’m glad you’ve spoken to a friend. And I hope you find a decent counsellor.

It’s appalling you’ve not had a CA - I asked for one, someone called up and asked me a few questions. Subsequent report landed on the wrong desk, was moved elsewhere and then sat there for 9 months. Then when I finally broke down the LA simply threw the book at me.

Disgusting.

Good luck with the upcoming tribunal - I hope you get to wipe the floor with the cunts.

I literally only found out about carers assessments when I did the IPSEA training online last month.

Basically what happened was our paeds nurse referred us to social care OT and the CWD team for assessment.

Social care OT has been amazing and really helpful, saying we need specialist equipment (safe beds) and a grant to make a new bedroom.

CWD admin called me and asked me questions and said it sounds like we should qualify for help then the social worker called me and said we don’t but the paeds nurse should do a continuing healthcare assessment (completely irrelevant, they are not physically disabled).

I saw the report they wrote - it says we have a good support network (we have none) and that we are coping fine during lockdown (ha. This was about a week into it).

That’s it. Nothing else offered or suggested. In my tribunal response I’ve refuted the report but the LA are refusing to seek further social care advice - we have appealed this section but we don’t have any evidence to use to say we should get help. It’s a right mess.

Having a child with any kind of extra need is horribly isolating. In my case I had counselling and my ‘mum’ friends all have kids who are similar to mine. ❤️💐

Didn't want to read and run. My situation is completely different to yours, but I do have reached my breaking point this past week. I'm back on antidepressants, and gone sick from work (which I feel terrible about because I'm WFH anyway). I feel like I am going insane.

You are entitled to a carer's assessment under The Children's and Families Act 2014. Here on page 4 there is a sample letter from Contact you can use to request one.

You don't have to be physically disabled to get CHC funding.

Do follow up applying for a Disabled Facilities Grant. That will definitely help you.

The tribunal can recommend better social care provision for DTs. Although frustratingly LAs don't have to adhere to the recommendations, but if they don't they have to explain to the tribunal why they aren't and you can complain to the LGO.

Have you got a Homestart volunteer? I know they aren't operating normally at the moment but in normal times they could be another pair of eyes and hands to help you.

then the social worker called me and said we don’t but the paeds nurse should do a continuing healthcare assessment (completely irrelevant, they are not physically disabled).

Ah, the old ‘Not our problem, it’s insert other public body/third sector org here

You know, after dealing with them for now 3 years (and ongoing) I’ve found little difference between them and the psychological tactic and games abusers play.

I hear you. I have 2 children with complex needs . One is 14 with autism and it is v hard most days with constant meltdowns and screaming . They both require round the clock medical attention and one doesn't sleep much a lot of the time.
We are on week 19 of lockdown so not a minute off in all that time.
Like you I was doing ok until about a week ago when I reached a level of exhaustion that I wasn't aware actually existed. I felt really low for a few days though I am feeling a bit more upbeat again after 2 nights of better sleep.
It is v hard work for parents of sn kids at the best of time but the complete lack of school is definitely exacerbating things.
However it won't be forever so try to just take one day at a time is my advice. One day life will resume and at least the dreaded 6 weeks hols will be a doddle from now on ,

One relatively easy help to get was short breaks funding. We used it for respite care and for days out for a while. It's not a fortune but could give you and your DH a bit of a break

I’m pretty sure our LA’s short breaks offering has no relation to their actual legal obligation under the Short Breaks regs - it’s just arranged activities for disabled children, and there’s pretty much nothing for young children either.

www.poolefamilyinformationdirectory.com/kb5/poole/fis/service.page?id=WNvonl_TdTo

Something else I’ll pursue when this tribunal is over, they are utterly awful

Not to hammer home a point....cunts.

It’s a shame we’re not in the same LA - I think there are many many parents across the UK utterly fucked over by their LA and at best not finding each other, in the middle shamed and blamed into silence and at worst, dead because they’ve been ripped apart and thrown into a skip to die.

And of course, there’s no funding for anyone fucked over by an LA to be able to gain the support to challenge them effectively.

Op you come across as someone who is so capable. If I was your friend I'd be devastated if I thought there was something I could do but you didn't feel you could let me know how bad things had got. You have intelligence and love showing through in everything you say, so I would take a bet you have pretty decent friends, please let them see where you are so they can support you too the best of their ability. I know it's rubbish being the person who needs help (I've been there financially in the past, no comparison of course...) But most people would love to give help, you know you would yourself if you could. Being on the receiving end of help is so much harder than giving it... But, if your friends love you, they'll find a way to make it feel ok.
I hope you give your LA what for, I hope that you and your dh find some respite from somewhere. I wish decent people like you didn't have to fight for what most people would assume would be forthcoming.

Hugs hugs, OP. We’re in a similar position and it feels so fucking relentless, especially at the moment. I’m so sorry your LA is being so dreadful - give them hell.

Being a SEN parent can be incredibly isolating and you sound very alone. The one thing I’ve found that helps is making friends with parents of children with similar needs. It’s so much easier to socialise in a group with your children if the other people just get it. And they’re often a great source of support and useful information.

Are you in touch with your local Mencap branch? They sometimes run activities for young children. And children’s centres also sometimes have SEND sessions, which are another good way to meet other people in the same boat.

And if you haven’t already, check out your local parent-carer forum. Ours is great at sharing information about services for kids within our borough and also holding the LA to account for its failings.

Best of luck with the tribunal, OP. And hang in there. You’re not alone.

Thank you so much everyone - you’ve been so kind.

I did go out last night and it was really nice. Spoke for a bit with a lovely friend who’s really struggling too and it was just nice for us both to be able to have a bit of a rant and have someone listen. They were all lovely and never make me feel like I’m tedious or they don’t want to hear it so I don’t know why I tell myself they will. It was actually really nice and we are going to try and do it more often now all our twins are a bit bigger and (most of them) are easier to handle in the evenings!

I am just hanging on for the weekend so I can have a rest but DH has badly hurt his wrist so probably won’t be very restful!

Thanks everyone, for helping me see I’m not just a horrible burden which is definitely how I felt before

You are managing in very difficult circs and you have kept going and going in defence of your twins. I think that is awesome. In fact you sound pretty awesome all together. Glad you enjoyed your night out - well deserved

@SinkGirl that's rubbish. I'm sorry. Our borough is crap but that was one thing that wasn't too hard to get

Have just done some digging around in the Short Breaks info and it includes an organisation called Diverse Abilities which includes various things including activities for kids (starting at 8!), but also respite care etc. All of which need a social services referral, not of which was ever mentioned to us so I guess we don’t qualify according to the criteria (which an LA can set at whatever they like for children, perfectly legally, unlike for adults).

I don’t expect we will get anywhere with the social care part of our appeal. Just had a closer look at what I thought was their assessment but no - it says we don’t even warrant a fucking assessment!

Apparently I said I was coping well with the pandemic... about a week into it all. Wonderful.

Not sure what if anything I should do at this point. So worn down with the education part I don’t have the energy to fight this too.

Found the criteria - I guess we don’t have “complex family circumstances”?

Ridiculous.

Here for you, OP. It's so hard to hope for help and find you aren't eligible. Do you have any local, RL support? When is your twin's next nursery slot?

They’re going on Monday for 3 hours so will hold on to that - didn’t make much difference last week but hopefully it will this week.

We had six months of Homestart but that ended at the start of this year. There’s no one to help so we are just trying to get on with it.

Big hugs. I’ve got three primary aged kids and two have autism and adhd. The youngest has very complex special needs and I’m shattered. Just about hanging onto my job and pulling myself through but it’s gruelling.