AIBU to just think this is my life now. No chance of a career etc

[Lifecanbeabeach2]

We just celebrated my daughters 5th birthday which is amazing and I love her more than anything in everyway. She has just started school but only part time.

So now I’m feeling deflated. I had daughter at 22 just as I finished training.
She wasn’t planned but i decided to try make it work.
Then she was born seriously ill, her dad left and we were in hospital for the first 2 years.
She now has a lot of cares to do at home, especially during the night. She has still been in and out of hospital.
I’m now 27 in a tiny London council flat on full benefits. I get no time, I can’t go out because babysitters need to be trained.
I looked in to different careers but with childcare is a massive issue ( I would still need to be there in hospitals and up all night doing cares )
Job I would probably be fired as would require so much time off
I thought I would get some time when started school but I have to drop her off at 9 and pick her up for 12 so basically 2 hours of “ spare time”
I haven’t even had my hair done in 5 years or watched an adult movie at the cinema etc.
Am I shit person for having moment of wishing my life would be different!

Banana that’s a whole different story 😂he didn’t just leave his made it incredibly hard by his screw ups along the way to !

what ever is wrong with your dd can you find a support group who may be able to help you even if only an online forum?
the two hours in the morning may not be much but take time for yourself go for a coffee somewhere or a walk in the fresh air a soak in the bath without interruption etc
i imagine life is very hard and tough for you i hope your dd continues to improve and thrive maybe soon be able to go full time to school
can you ask your gp for respite care for your daughter or someone like home start you do sound very depressed your gp might suggest talking therapy

Presumably you are fighting for an Education, Health & Care Plan for you daughter - once that is in place, hopefully she can attend for more hours.

Look at your local Council's website for their "local offer" to find out whether there are clubs she can join to give her a little independence from you but also give you an additional break. You are looking for "short breaks" support.

Get in touch with your Council and ask for a support assessment for your child but also a Carers Assessment for yourself (the two may be combined into one assessment).

Start all this now but don't hold your breath as these things can take time, you have to keep asking. Our son started with short breaks support from age 3, he joined a local disability club (3hrs on a Saturday afternoon) at age 5, and we finally got a direct payment for respite when he was 8.

In the meantime, plan and use the time she is at school. Don't use it on household stuff, presumably you've learnt to juggle that around her needs before she started school, so you can still juggle that around her being home in the afternoon and weekends. Instead look on those couple of hours each day as time for YOU. Book a hair appointment, get your nails done, perhaps join a gym, even explore what's changed where you are. Make it your time.

In my part of the country (Wales) our children with life limiting diseases are allowed to spend around 2 weeks a year in Ty Hafan. It is a Childrens Hospice but before you get the wrong idea most of the DC that go there go for a lovely break with or without their family. Is there nothing of this sort for you to access in London OP. It is such a wonderful experience for the DC and their families. I am sure there must be something of this sort there for you . Have you asked your Health Visitor or at your DD hospital ward , they usually liase and refer these DC to the Hospices for this exact sort of thing. In the meantime Well Done you are doing a great job !

Could you apply for a house swap and move to a different area of the country?

www.mind.org.uk/information-support/local-minds/

In my area, Mind does a coffee meet-up every Wednesday morning. Is there something similar in your area?

Sorry OP. You are clearly going through a tough time...

I have an almost 11 year old severely disabled child and I am sorry to say - I am afraid you are right. Things only tend to get harder the older out children get. before and after school childcare is non existing fir those with severe and complex needs. Likewise school holiday childcare. And once they get to the age of 11/12, there is no school holiday childcare at all. You are utterly and totally stuffed.

I think your best bet is to make sure you are getting all the benefits you are entitled to. There are also charities who help with extras such as little holidays, an iPad or so such as the Family Fund.

join parents support groups (there are usually a few running during school hours which help you to get out and to connect with people who 'get' it).

find some cheap hobbies. I got a guitar and a sewing machine of Freecycle and teaching myself how to play guitar (YouTube) and making clothes.

it's all not the same as a job but all in all it keeps me busy and gets me out of the house.

But I really would be lying if I told you that a career (or just a job) is easily combined with being a lone parents of a child with complex needs.

I wouldn't move out of London. Sorry, but the medical care you can get in London and the transport is just so much better.

You need to find a local support organisation (possibly just a generic disabled children's one, it doesn't have to be specific to her condition) that can help you make sure you are accessing everything that you and your DD are entitled to in terms of help and education. You'll hopefully find some friendship and support from other parents then who are in similar situations. You sound like you've had to deal with an awful lot at a young age. Hopefully, your DD will be able to go to school full time soon and then you'll have a bit more breathing space to think about things you may be able to do for you.

My goodness OP. You have had a tough time but sound like you have been coping really well. Is that your little girl in the ad you posted? That had me in tears. I hope you get the support you need sorted soon. Please don’t worry about your career. You still have plenty of time for that.