I couldn't see a topic that suited but I need a break from life and I'm not sure how to get one!

[MeMyCatsAndMyBooks]

No idea if this is the right topic, admin feel free to move it to whatever it goes into. It's about everything and I'm about to flip out. Couldn't even be bothered to NC. Sorry if this comes out as a rambling rant!

I have two dc 12 (learning disability, autism, adhd, sleep disorder) & 7 (type one diabetes). I'm disabled myself with ehlers danlos. This comes into the story.

I haven't had a break from parenting in five years.
I've been with my kids every. Single. Day. And night for 5 years straight.
I don't live near my folks, and even if I did they probably wouldn't have my kids because of dc7 disability and how dangerous it can be at night. (Day not so much because you're awake and can keep an eye!)
My in laws are as much good as a chocolate freaking tea pot.
I get dumped with DNephew to have overnight every single time they come to visit, they never offer to have my dc even before dc7 diagnosis even commented once "I couldn't look after them both."
Love DNephew, but I really don't want to have him overnight anymore when they visit it's to much. The people pleaser in me is always "oh it's nice for DC to have sleepovers!"
MIL & FIL just add to daily stress and isn't something I really want to get into because we'll be here all day.
DH while he is helpful with DC, he does do insulin shots for dc7 and he'll help with dc12 meltdowns etc that's as far as help goes really!
I do all life admin. I drive him around because he won't learn to drive.
I do all housework despite using a walking stick to help me because one side of my body no longer works well. I even sort the bills (but he does work so that's something?)
I sort the kids when they have friends over. I take dc to events & my parents house so DH gets a lovely weeks break a few times a year when I take them away, he goes out once or twice a month with his friends while I get no break. Nothing. Nada.

How do I get a break with two disabled dc no one will happily watch them overnight for me because of the dangers. Nobody wants to be responsible. I've even looked into babysitters online and while I can find one for dc12 disabilities I can't find one who will happily look after a diabetic.

I feel like I'm going crack.
I'm so, so run down and tired with everything on top of a really soul destroying illness of own. I wake up with dislocations just from sleeping funny in my sleep. I can't even take pain medication because I need to be with it to look after my kids.
I'm constantly tired because of course I have to check my dc7 blood sugars through the night, or dc12 doesn't want to sleep.
It's just to much. Even if I asked DH to look after the kids for the night I have no friends because I don't have time for friends so that's not even an option.

Life sounds pretty stressful for you, I don't think anyone would judge you for wanting a break - and you definitely need one. I don't have disabled children but I can definitely identify with being a disabled parent and being a self diagnosed people pleaser and what I've recently learnt is that the people you please are ,more often than not, not aware that you are overstretching yourself to help them. (Of course there will always be p-takers that no full well they are taking advantage). Your Nephews parent has been vocal in saying 'I couldn't have them both' so you need to be vocal and say I can't have all three.

Does your DH know how you feel? He definitely needs to support you to have a break. You mentioned you take your kids to your parents for a week so your DH has time to himself... could you arrange a visit to your parents by yourself even for a weekend?

First, stop agreeing to take your nephew. You have more than enough on your plate, so start saying, "sorry, can't look after Damien this weekend".

Tell your DH that you're at breaking point. Would family finances allow you to go away by yourself for a day or two at the weekend, just to sleep and recuperate? My colleague has a child of a similar age to yours, who also has T1 diabetes, and has just had a pump fitted. This has meant my colleague has been able to get some sleep at last. Would that be something to look into for DC2?

You sound worn out and in definite need of a break and support, I hope you can get these things and I'd like to help you pursue them.

I think you need a social worker from the Disabled Children's Team to assess both children and carry out a carer's assessment for you. Local Authorise vary hugely in how helpful they can be and how high they set the bar for accessing these things but don't let that put you off as you deserve this support as much as anyone else.

These assessments together should conclude there is a need for 'short breaks' which can be anything from a personal assistant to take the child or children out or look after them for a few hours in your home... to overnight respite in a respite centre. You need a break from this life to support your wellbeing so you can continue to do the amazing job you are doing caring for them both.

Not sure where you are but the information about requesting assessment should be part of your Local Authority's Local Offer which should compile all relevant information relating to children and young people with disabilities. I am happy to help you put together an email/request for assessment to them if you feel you need support to do it... or you may have a local Parent Carer Forum and they would likely be able to advise and support on this. Sorry if I am telling you things you already know!

I have a disabled 10 year old son with autism and SLD and he currently has one night of respite per month, and attends a specialist holiday club two days per week. We have no family who can care for him and our younger son is still at home when he goes so it's not a total break but allows us to breathe. It still feels like a drop in the ocean but it's better than nothing and I am sure something like this would help you and should be available to you and your children.

A pump isn't currently a option for dc7. He doesn't even have a CGM yet thanks to NHS fuck ups which means I'm doing everything without any diabetes new technology which is probably what's grating me down even more.
A disabled social worker is a good idea, thank you for that I always thought I'd be turned down due to DH being around but all the stress and lack of sleep has really made my disability worse and I just can't do this anymore. I'm so close to breaking point.
I've told my DH I would like a weekend away in a hotel even if it's just close by to catch up on sleep for two nights but he doesn't encourage it and just scoffs at the idea.
The only time I get a "break" is when they are at school but I get phone calls and messages from both schools a lot through the week due to their high needs and then I have to catch up on housework & admin so it's never a break.
I need to stop being a people pleaser, I do it for MIL/FIL too and it's just to much. I was falling asleep on the sofa earlier because I was just to polite to tell them F off.
I'm going to contact social services and see if they will help, I just need something.

Definitely don't take nephew overnight if you don't want to. Could you go to your parents for a weekend on your own? Or like you say, a hotel. Your DH cab scoff all he wants but you need this time, book it and go.

Could you get a cleaner in the short term so you can sleep more whilst the children are at school? Perhaps explain to the schools that you need to sleep in the day and to only ring between 2 and 3pm (or email if possible) for example unless it is an emergency. Would a nurse babysit for you occasionally for extra cash?

Thought about a cleaner, but DH says no I'm at home so don't need one even though I can't work due to dc and my own disabilities.
I've asked him to help many times with house work but get "you need to stay active or you'll get worse." he thinks taking a washing basket upstairs is helping.

No idea where I'd find a nurse who would be interested in babysitting. Think I'm just stuck like this.

Your DH sounds like a bit of a wanker, TBH. Is he always so unsympathetic? Looking after 2 disabled kids is really hard work, even if they do go to school. Tell him you're going to see your mum for the weekend, ON YOUR OWN, he's in charge of the kids for the weekend, and you can get some rest. Don't ask him, just tell him.

You'll get some rest and he might realise just how hard you work all day every day.

I'm sorry but DH sounds way out of order here. You are disabled and unable to do the work of an able bodied person. If he can't see that it's his issue. Hire a cleaner anyway, this is something I think you need to put the foot down on, I understand its not easy. And I'm surprised he won't agree to an overnight away, if you get one night and he does the same a week later everyone wins. I have done this many times when I just get too stressed or overwhelmed, it doesn't have to be pricey just a local B&B would do.

I think you really need to be firm here OP. You've been dealt a tough hand and it sounds like you have done so well but you absolutely need a break.