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.

Didn't want to read and run. I also have 3 yo twins and they are hard work. It all sounds rough. I will say though I think you should go and see your friends, and you should share your worries. If they are decent friends they will want to know, even help maybe? Worst case scenario you get out of the house and do something different, I've often had to force myself to but I've never regretted it. I'm sorry life is so hard at the minute op.

Another mum of three yo twins here! I have felt like that, and anti depressants and a shit load of therapy helped massively but the majority of my issues stemmed from birth trauma so that's really what the treatment was aimed at, but it did teach me a lot about handling anxiety and stress. I couldn't imagine what you're dealing with op. I haven't really got any practical suggestions apart from GP and getting yourself some anti depressants and onto the waiting list for therapy. I've had cbt which really helped me to cope with day to day stress and anxiety which was giving me panic attacks and extreme low mood. Good luck.

Have a 6yo with autism here so have been through some of what you're going through.

Completely understand trying to get them the help they need is so draining, and it's so upsetting that you have to fight so hard to get the help. Please keep going because it does get better, keep fighting and get the support they need and things will get easier.

I remember when I used to compare ds to the other kids, I'd see how far behind he was and it would really upset me. After a while I realised that I shouldn't be comparing him to others, but instead looked at his own progress against where he was 3 months/6months/a year before and it gave me comfort and pride to see the progress he was making himself.

It's really good that your dh is so supportive. Try and keep talking to him/a friend or family member about how you're feeling. I tried to be like you, being strong, pretending everything was ok and in the long run it was the wrong thing to do, when I eventually ended up in therapy this year, I discovered I had complete blocked out all of my emotions and didnt feel any feelings any more (even happiness) because I'd learned to block them all out.

Thanks everyone. I feel a bit better just for having a couple of hours to sit quietly, it’s just the constant noise and stress and everything all at once is getting me down.

I’ve tried antidepressants before and they haven’t really helped but maybe I need to try them again. Although I feel really low now I don’t know if I’m actually depressed or just physically and mentally exhausted.

Sorry if it sounded like I’m comparing my boys to others - it’s not that really, it’s just that the gap between them and my friends twins gets wider all the time and it’s just getting harder to relate to what’s happening with them and vice versa. I don’t want to spoil the first night out everyone has had for ages by being miserable. Maybe I’d be okay once I was there.

We’ve all been friends since our twins were little and they’ve all been so lovely, but I don’t want them to get tired of my problems, and I know they are tiring!

Hopefully we can get some sleep tonight and I’ll feel a bit more positive in the morning.

I've seen many of your posts before, OP, and I've always been touched by your love for and dedication to your kids. I'm also a mum of SEN kids, though not as significant as your boys, so I can empathise with some of it. Being an SEN parent can be so lonely and isolating can't it? Do you think you might be able to find a charity who offer a befriending service for parents who you can connect with and share some of your emotional load? It sounds like you want to have a bit of an outlet for some of the really difficult stuff so you're not placing a burden on your friendships (not saying that sharing how you feel would be a burden, just that it sounds like you're saying that's how you're feeling).
Are your work understanding and supportive of your situation?

Sounds really, really challenging. Well done for hanging in there. Good that you have a supportive partner, hopefully you will get some sort of respite soon.

I’m so sorry you feel like this and yes, I have been where you are. Not at all shocked about the lying, gaslighting and ignoring the law etc from your local authority - I went through something similar and it took me over two years before I finally managed to hold y local authority to some sort of account (they destroyed my life, and my children’s). They are cunts, Im afraid, and will do almost anything to get what they want until someone with more clout than them (or with a bigger understanding of the law and policy) comes along to rap them on their knuckles.

Please please lean on those you trust as much as you can - you are your children’s glue and you deserve to be supported.

You should go and cry and tell your friends your world is falling apart.

You cant keep this sorrow and hardship in any longer.

Youre going through something awful, in a time that's unprecedented globally.

Its ok to not be ok.

Get a taxi, drink wine.

I feel like once you say it, you will feel so much better. My husband and I call it word vomiting. Just get it all out. It feels awful.

I keep reading this and thinking if I was your friend how much I would want you to get out for an evening, and how much I would desperately want you to tell me about it and consider how I could help in any way. But I have found a friendly ear always helps.

Yes I’ve got a wall this week, am totally deflated and I’m not dealing with half of what you’re dealing with.
Sounds really tough, take one day at a time and don’t look too far ahead, you’re doing great to have gotten this far!
💐

I'm not surprised that you're feeling worn. It's a demanding set of circumstances to begin with, without the added complications and intensity that recent months have thrown in. I have no advice, but you are not alone in these circumstances

I have a severely disabled 5 year old DD and two older (but still young) children and I'm right there with you. Feel like I'm barely hanging on by a thread. DD cant walk and needs all cares etc, it's so bloody hard. I feel like we've been forgotten about TBH.

Oh bless you. You haven't failed. You've managed an impossible situation incredibly well. It will get easier in the end. You are doing all the right things. Go to bed. Tomorrow is another day xxx

Yes, I felt like this a few weeks ago. My 8 yr old dd has ASD. This lockdown period has nearly finished me off.

Do you have any contact with any local parent groups? The one I meet with has a Facebook group where you can sound off and get advice. Sometimes you just need people to understand what you are going through and be able to offload.

My dd spends all day, every day on screens. Because I have lost the will to fight with her and deal with the meltdowns.

It sounds like you have the most challenging set of circumstances and are doing really well surviving.

But it sounds like you could use some support. Enlist as much help as you can get and please go out and see your friends - it will do you the world of good. It'll make you feel a human being again, not just a mum.

Do you have any family who could help you? See if there is any support groups around. It would really help to talk to other mums who are in your situation.

You sound like you've done so incredibly well in a very hard situation. When I read posts like these I want to step in and give you a break or a cup of tea and a hug. You should feel so proud. It has been hellish even for people who haven't had your struggles so do remember that. I think we can all only keep going a day at a time. If you can have a good cry and try and watch a funny film one evening I think that helps. This pandemic definitely won't last forever so it's a case of gritting our teeth and getting through it although I know you will still face struggles on the other side of this. Definitely reach out to a friend if you can. I think it would help.

I hear you OP. I have an autistic 10 and 11 year old and lockdown almost broke me. I also described it as being Groundhog Day.

It wasn't too bad at the beginning, almost a novelty plus being in the house all of the time suited one of my children but had the other one climbing the walls.

Then, I had to sort out an EHCP, do work and deal with my kids without a break. Beforehand, I always made sure that I gave myself a few scho hours a week to myself so that I could cope with all the shit that flies at you as an SEN mum. By God,not having those few hours for months on end were hard (and my own kids are likely to be far less work than yours).

Be kind to yourself, you've just been to hell and back as well as having to work and sort out 2 EHCPs!!!! It sounds like you're superwoman to me!

What helped me was having my two back on school for a couple of days. That break really helped.

Plus SCOPE have offered me some parent me tiring sessions so I can just talk about my own feelings and needs. Perhaps contact them and ask for that for yourself? They may be able to help on a practical level. You urgently need respite and just to be able to put your feet up and switch off for a few hours.

Thank you so much everyone, really appreciate you being so kind to me.

I think it’s definitely the EHCP tribunal stuff that has pushed me over the edge - it’s such a disgraceful system, and having to repeatedly pick through reports to find all the things your children can’t do and all the help they need is pretty soul destroying at the best of times.

I really appreciate all the advice. We had just been to a groups run by a local charity twice before lockdown started so I don’t really know anyone there and I’m sure that support would have been really helpful through all this.

Luckily my boss is fantastic - it’s a really flexible job anyway, with just a few meetings that are set in stone, but the work itself has been increasingly stressful (I work in an area of the NHS that has a lot of restrictions now and a lot of very upset people, understandably).

I will contact Scope and see if there’s anything else I can access. I agree with the person upthread who said they feel like their family has been forgotten about - we definitely feel like that.

I am really hoping they can go back to nursery more soon, I definitely need the break and I know it will be good for them too.

Thanks everyone

@LaLaLandIsNoFun they really really are - I’ve never experienced anything like it. They will look you right in the eye and pretend the law doesn’t exist. We now have enough evidence that I feel confident we can win - but only because we’ve found over £5k to cover the costs. They are throwing tens of thousands at an external law firm and a barrister for the hearings. It’s insanity. I won’t start ranting about it or I’ll never stop!

@SinkGirl it’s jaw dropping isn’t it? No accountability either - these people should be sacked. When it comes to children’s SS and SEND they really are a law unto themselves and so very many families with legitimate claims either give up fighting or are too traumatised/destroyed to start to fight in the first place.

The only positive is that we are starting on it early - when I read the stories of kids who’ve already missed years of school it breaks my heart.

The LA want our twins to go to a school for children with profound and multiple learning disabilities, despite the fact they don’t have learning disabilities - they need an ASD specific school, but they are refusing because it will be £8k a year more. Apparently sending them to a school where they can get the right input and meet their potential is a waste of public funds, but splashing out on a solicitor and barrister to prevent them getting what they need is a great use of public funds.

So many times I’ve been sure they’ll concede but no, they’re sticking to their guns, even where those guns are illegal. For example we have several pieces of evidence that say they need full time 1:1 but they won’t put it in the plan because their school hasn’t quoted for that (ours has, so it’s more expensive). So instead they want to write “high level of adult support as needed”. On what planet do they think the judge will agree to that wording? You’d think their solicitor would be telling them it won’t fly, but apparently not.

Sorry, I’m ranting now.

You poor poor thing. I have an older autistic child, now at a special school so I absolutely understand how awful and soul destroying it is to have to fight so hard and to be lied to all the time.

Things looked up for me when I found friends in a similar position. I feel my friendships with people with neurotically kids are actually pretty shallow, certainly those I made at the school gates. It's very very isolating.

Have a cry. Try to do something that gets your body moving. Try different anti depressants. Avoid drinking too much (I was a semi alcoholic for a while - didn't help at all).

Big hugs

We did a sleep course with Scope which was brilliant. I'm not sure it's in all areas, but worth asking.

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.

If DTs don't have LD then I agree the school isn't suitable. However, just be careful how you phrase the reasons why. Case law says while the LA have a duty to meet a child's SEN and ensure the provision is appropriate they don't have a duty to provide the best possible education, school or to educate to their maximum potential.

I hope their EHCNAs included proper social care assessments and you have had a carer's assessment.

Bloody hell OP, you are coping above and beyond. Give yourself a break, please, go out, drink wine, cry, laugh, be merry with your friends. If they are good friends they will cope, and probably they will feel honoured that you shared this with them because you sound like a coper. A few years ago I fell apart mentally and one of my friends told me that she was quite relieved as she saw me as so perfect before. I didn't know whether to laugh or cry when she said that but now I am so grateful for her honesty. Do your friends a favour and turn up as you are, warts and all.