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.

Oh OP please ignore the posts talking about going back to work, clearly from people with NT children. My Bro and Sil have two high needs autistic children. SIL has never worked since the day her DS was born, I have nothing but admiration for them. Their life is far tougher than mine, their DS doesn't sleep and they have a young teenager constantly saying he wants to die.

Do not justify your life to anyone, at least not randomers on MN.

When you are running on an hours sleep a night, because your child can't settle at all, has nightmares, is up and down waking you with his fears, having meltdowns and shouting. When you daren't even drive because you are so exhausted. When the school calls you 3 days in a row to collect because they or your child aren't coping. When your child refuses to go into school and it tales you half the morning to get him there. When you have medical appointments every month.
Yeah, employers are falling over theirselves for those type of employees.
People just have no clue or no empathy sometimes.

You don’t have to justify your life choices to anyone. It’s your life not theirs. Run your own race and ignore everyone’s’ comments. Some of the comments here will be ignorant aswell - it doesn’t matter what other people think. You do the best for your family and yourself, whatever that looks like. x

We have around 20 TAs at my school - every one of them with children work school hours so they can do the school runs. We are absolutely desperate for TAs as they are as rare as hen’s teeth these days!

OP you are doing a really good job bringing your family up. You know your priorities. These in-laws of yours are rather stupid people who are aren't able to imagine the reality of your life.

TA isn’t the dream job that some would make it out to be. Yes you get the school holidays but there isn’t a lot of flexibility otherwise and it is bloody stressful!

My ds sounds similar to to the OPs, he is now 15 and in mainstream with full 1-1. He is an only child though so I don’t need to juggle others.

I stopped working when he was 5 and I realised I couldn’t be everything to everyone and I needed to focus on him. Two years ago things were stable enough for me to be able to dip my toe into a return to work as a welfare assistant. I have been very lucky that from there (and with a very supportive head, and support network at home) I have been able to build up hours working as a TA. It’s not easy though and at times I feel like I am trying to keep too many plates spinning!

How does he need constant supervision if he’s in school? And your older DC won’t be at home during the working day either. Do you honestly fill in multiple forms every day?
I get that it’s very hard having a child with SEN, but there are many parents with SEN children out there that DO work. You and your DH have decided that for your family, you don’t have to go out to work, and that’s OK. You don’t need to justify your choices to anyone outside the family.

I have 3 DCs 2 with autism and high needs and I still managed to work full time.

I mean you do you OP, I'm not having a go but let's not pretend that your decision not to work is not a lifestyle choice.

By your own admission, your DS is at school and is "high functioning".

The truth is that you don't need to work as your benefits are able to support you well.

Ignore them. You are doing great. People who have not been there rarely get it.

OP hasn't asked for alternatives. It's noone else's damn business how many hours she and her DH work if it works for her family.

The people telling her to just get a TA job are as bad as her PIL.

School is 32.5 hours out out of the 168 in a week. What is your point?

Totally agree with this - as a single parent to me the choice not to work is an absolute luxury.

OP I think this is the issue here - you're saying you absolutely can't work when you could. But you choose not to - which is totally your prerogative! Just tell them that - it's your choice, it is what works best for your family - and that is okay!

I was a SAHM for 6 years so no judgment here!

@THisbackwithavengeance

Caring is a job and I think - if you are going to be critical of OP, then a criticism could be levelled back : how is it possible to work full time and provide adequately for the needs of your DC?

It’s not about ‘being on benefits’ or a ‘lifestyle choice’.

Please could you tell us how you managed this when school doesn't cover full time hours?

Because his previous job was all consuming, with no flexibility?

Thank you for articulating this for me. So many fantastic posts on this thread naming this ableism and lack of social empathy that is rife.
I hate that parent carers of their disabled children or adults are shamed for caring all the time that their kid is at home which often includes caring overnight not sleeping properly AND not also at the same time having a great career. I often wonder what drives this criticism psychologically. I think it’s people’s fear of misfortune in some form for themselves and a loathing of disability, but I can’t work it out exactly.

Maybe it’s that psychological thing that often people want to assume despite all evidence to the contrary, that a ‘bad’ thing that happens like being randomly attacked or some kind of bad accident or getting a bad long term illness, must be your own fault. This is because they can’t bear the actual truth that actually any of these things, and more than one of these things, could happen to anyone at any time?

Obviously I’m not trying to say that disability has a moral dimension of goodness or badness like that, disability just exists. Morally we need to respond to meet the needs of all disabled people if we are decent human beings and a functional society. And we really don’t do that. Apologies if I can’t write this very well, as a fellow exhausted parent carer

It’s a great suggestion. However most schools require level 2 nvq etc qualification as a minimum, most I’ve seen is level 3 requirement. You have to find a placement in order to complete the course as well.

@velodrome

Exactly. Unfortunately, it’s not just this aspect : it’s a battle in all sorts of areas. Securing the right help, school placements, attitude of other parents. It’s constantly trying to displace the negative language, stereotypes, cloud of shit that others seems only too willing to waft over my DC.
My job is to ensure DC is happy, that DC gets the best out of life - and to turns the cant’s into can’s.

Your ignorance is astounding. I am a single parent working full-time .it is a walk in the park to what parents with children who require such support and meet high level DLA.

And this is why parents with children with SEN end up having breakdowns. Sure they can keep going 24/7.

Horrible posters here. WTF.

Caring for kids with special needs is so important and undervalued.

Ignore GPs, OP - they're ignorant... And good luck to them when they need care.
Don't lift a finger.

TA are there before and after school so OP would need appropriate childcare, not easy to find.

The fact that when a child receives DLA (may depend on rate I’m not sure?) there is no UC work requirement for one parent says a lot about how tough/impossible it can be!

This is nothing like having a baby who doesn’t sleep because it’s ongoing for the disabled persons life. They can’t be sleep trained. If they somehow grow out of having terrible sleep that’s a bonus but with a lot of people it’s a nervous system issue that’s ongoing. They need practical help and reassurance in the night multiple times because the stimulation of the day is too much for them. if they won’t take prescription sleep medication then the carer just has to manage it all somehow. It’s horrendous and usually makes the carer ill in the end.

I'm not sure jobs in schools would be beneficial to the OP. First of all the work is unrelenting, the atmosphere these days often strained and yes, you get the holidays but there's no flexibility for appointments etc. In relation to your families comments you will have to cultivate the ability to ignore them.

Why would a parent who is recognised by the state as meeting carer criteria be expected to take on a job supporting other children?

So the idea is she takes care of a child with SeN every waking hour ? Do you not see how unfair and unjust that is?

Parents in these situations need breaks to be able to stay healthy and to be brutally honest keep finding ways to support their own child. Can the race to the bottom stop.

Having seen the day to day challenge of a family member there is absolutely no comparison. I did the single mother gig, the difference? I got sleep, I could leave a room not expecting to come back to an emergency situation. My children gained significant capacity to be independent.

I could leave them with a sitter. I could cook a meal when they were with me. I didn't have constant forms and research to ensure I s non trained professional gave my child the best chance in life. Because it was set up for them