Fed up of being treated like I am worthless and a drain on society because I don't work

[elliejjtiny]

Dh works. He used to have a well paid job but he took a pay cut so he could be more flexible for the dc who have SEN and multiple hospital appointments. I am carer to 10 year old ds who has autism and emotional development delay. He is considered "high functioning" but he receives high rate dla and he is in mainstream school with part time 1-1. This is going to be increased to full time 1-1 when he starts secondary school. In a lot of ways he is like a very intelligent toddler, especially with maths.

PIL came round today. They provide regular childcare for SIL's dc but have looked after my son probably about 5 times in the last 10 years. And never for very long. Because he is difficult. That's fine by me. But then they criticise me for not working. It's not just me,( actually they moan about me a lot less these days because they know I will argue with them and point out that they won't look after ds, school struggle with him so how am I supposed to work) , they go on and on about "people on benefits" and they assume things that are just not true like they think everyone on universal credit gets free holidays and they say the benefit system is more than generous and that people should stop moaning and get a job. Fil has been telling me with glee that one day ds won't need me to care for him and I will have to get a job. To me that's like telling a blind person that one day they will be able to see and they will have to give up their white stick. I would be more than happy to work if ds didn't need me to look after him.

I know sil thinks I should be working (although how, I have no idea) and every so often I keep thinking that maybe other people think this too. I've always said that when ds sleeps through the night I will try and go back to work part time but that hasn't happened yet.

And this is the other thing. It's all very well people baying for OP and others to 'get' a job. The level of accommodation needed by some parents to attend appointments etc is something which, unfairly, will put a lot of employers off regardless of a candidate's suitability for a job otherwise. It's not right of course, it stinks - but we all know discrimination happens. Bit naive to suggest people can simply 'get' a job the same way they can nip down the road and 'get' a pint of milk. Anyone who needs extra accommodations is likely to face extra difficulty finding work. It sucks.

Today I worked a full day. I was lucky I had an hours dinner today. I spent that hour running around chasing ds meds, I got back to work just in time but still not got them all sorted. On Monday I will need to try to find time to sort them - not sure how when the meds line is open for two hours a day and I am working those two hours. If I don’t sort it Monday we risk him running out of life saving medication before Christmas.

i am lucky I can ask my mum to phone for me and hopefully she will get a resolution but working makes it so much harder to keep on top of these things even with him being a lot more stable now

a) employers don’t have to give you time off for your children’s medical appointments
b) term time only positions (which is what you need if there is no holiday care!) are usually really inflexible, often for good reasons . how would you feel if your child’s TA is absent 2-4 times per week?
c) which means you’ll be let go at the first opportunity.
d) no sleep means NO SLEEP. not 6 hours sleep and a little bit tired. not waking up once per night. It means being desperately tired and not clear thinking. People need sleep. Otherwise they are a danger to themselves and others.

When I gave up work I worked part time for my local authority. I worked a day and half a week by this time. The LA arranged every appointment during these days and then refused the time off. The meetings were in the same building.

If I'm being completely honest giving up work was the best decision I could ever make. Everyone including myself in my family has benefited from this. My eldest who doesn't have a disability has thrived from having a parent available for them too.

Don't get me wrong, I've worked full time from being seventeen until having my children and I had to keep a full working history with no more than a two week gap to meet security requirements to return to the career I loved, after my children were in school. This includes while i was at university in a stem subject. Obviously this hasn't happened and I haven't returned to the career I loved.

Anyone who thinks a parent carer is lazy where the child genuinely has a disability is incredibly removed from reality. I've worked very demanding night shifts in other time zones and nothing can compare to the level of exhaustion and demand from raising a child with complex needs. It is physically, mentally and emotionally and in every other way impacting. It never ends.

Just a small point. There is some protection afforded by the Equality Act when it comes to children’s medical appointments. If the child has a condition that meets the definition of disability under the Act, employers have a duty of care in the same way as if the employee was disabled. They don’t have to provide paid time off though.

Just a small point. There is some protection afforded by the Equality Act when it comes to children’s medical appointments. If the child has a condition that meets the definition of disability under the Act, employers have a duty of care in the same way as if the employee was disabled. They don’t have to provide paid time off though.

@Rosscameasdoody Thats all very well in theory! Who enforces the Equality Act? If your employer refuses, afaik all an employee can do is make a claim to the employment tribunal, which seems to be a long and time consuming process? It seems very similar to the SEN system, where it comes down to parents to police it; because the DfE certainly don’t! Most parents don’t have the wherewithal, time, energy and money to fight for their children’s rights?

A call to ACAS can be helpful as they can talk to the employer and explain their obligations, but the employer has to be willing to engage, I agree. I can only speak from experience as a disability outreach worker, and there are some good, empathetic employers out there, who are mindful of their employees’ wellbeing. Not all, by any means, but a few. If OP was considering going back to work, then IME the larger employers tend to be more familiar with their responsibilities. The biggest problem is landing the job in the first place, because if OP is honest, they can basically put her CV in the bin with no recourse.