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.

Again though - technically don't we all?

I'm not saying OP's situation doesn't come without its added difficulties. But aren't all parents fulfilling a 130 hours a week role?

Agree to disagree with it. As said many times, I don't care what the OP does, its her life and she can live it any which way in which she wants.
But logistically - I still haven't seen a valid enough reason that her current life would complete stop her from gaining any sort of employment if she really wanted to work (which in the OP she says she would do)

Would you employ someone knowing their disabled child has medical appointments or needs to leave school early, or not being able to come in because they didn't sleep last night because of their child's needs? I know there are laws in place to protect carers but I'd personally not employ someone who would be considered unreliable

But hasn't her DH cut his hours and enabled flexible hours to help more with DC?

So her DP should be available to cover her hours whilst she's working?

He’s not really cut them but gone self employed so he can flex. That doesn’t mean disappear every day, thats so he can help in serious events.

My employer does?

I am employed, 45-50hrs term time and reduced hours during the holidays. I work longer hours term time to flex over the holidays.

I regularly login or turn up at work on 2/3hrs sleep. A few weeks ago we slept 3hrs over 3 days, and both worked whilst he was at school.

It’s horrendous, but possible. I think what the poster is getting at is that it is doable, which for some (myself and my partner included), it is.

Personally I can see why someone wouldn’t work, the time during the day to catch up on sleep or admin would be great. But we also can’t be saying it’s not doable when people do.

I was in a similar position OP and eventually you just learn to ignore it. I gave up trying to explain or justify it and tbh I felt no reason why I should need to. I was a single mum and being a carer meant I had no work-related requirements at all, even when my autistic DS was in special school all day and was sleeping well at night (thanks to melatonin).

If DWP can accept that carers are justified in not doing paid work, then everyone else should too. I could have fit in some working hours during school time, but I was always encouraged by social services to view that as respite time (I suppose it saved them money as they didnt have to pay out for more respite hours), and I used that time for things like errands, gym and dance classes for myself (which I couldn't do outside of school hours as no childcare exists for secondary aged autistic children).

Granted - but you were a single parent.

OP has a partner working reduced flexible hours, so all those things you described I am guessing don't apply to the OP because she has a second set of hands.

Surely that's even easier then.

OP works a few hours, a few days a week. DP can make himself 'available' during these hours in case of serious events, but still be working.

Caring for a disabled person IS working

No one’s saying it’s not doable, people are saying it’s ‘almost impossible’ which it is. It sounds like you have been lucky to find a good employer and you obviously had the skills for that job (which OP may not?). For me, no one will employ me because I constantly need time off, I don’t have a dh/dp or family willing to help. I’m often running in 2 hours sleep. The only way I can manage to work is by being self employed but this makes claiming UC even more complicated. I do work when I can but can’t find anyone to employ me unless it’s for care work (which I have done but having to care for dd makes doing care work pretty tedious). Yes OP probably could find something part time to work around dh’s hours but she would have to find an understanding employer and a job she is able to do. It’s not easy.

I agree. But, do you forgive the family of a disabled child for doing what is best for their individual family given the current societal norms around jobs and support for families, rather than trailblazing? This is really not a burden the OP should have to bear.

It would be so much harder to find two jobs that were sufficiently flexible to allow both parents to play an equal role in their child’s day to day care.

They're clearly outrageous snobs. I'd tell them I've actually just taken a job as a Kings Counsel. So fuck off.
People like that deserve to be unhappy. They are pathetic. To be bitter and jealous of people who are unable to work. Why don't they just go on benefits themselves if they're so generous. What a pathetic way of being. I wouldn't want bigoted arseholes like that looking after my kids.

I totally agree. My employer is flexible in ways my partner’s isn’t - for example if there’s an issue after school, I log off until he’s finished then pick my work back up later, because he can’t just disappear and I can. That’s a combination of the companies we work for, and I’m in a more senior position so ultimately less accountable.

It would also be harder if there was just one of us, we too have “two pairs of hands.” Being a single parent to a SENd child definitely must be even harder. If that’s the situation you’re in, then that’s different from OPs - there are 2 of them.

I’m in the fortunate position that I can work with a flexible employer, she’s in a fortunate position that her husband can support them all. I just think (like someone has previously said) that if you have a supportive partner at home, a few hours work is possible if you want to.

I also don’t have any judgment if you don’t want to, working and caring for a disabled child is tiring, and I’m more than aware of that.

“Doable” - surviving on that little sleep for any protracted period has huge health implications for starters.

I work reviewing documents, there is no way I could do my job to any acceptable level on that level of sleep.

So not every job could be open to the OP.

For those wondering what additional things SEN parents may do, I'll give some examples. I have two child; my eldest very bright and going to a "top" uni in Sep 4 A*'s at alevel, my youngest has complex needs and is 15 years old. So I feel I can compare. I'll start at morning wake up.

Wake up and out of bed around 4am but been up.about three or four, possibly five times in the night. DH stays in bed as gets up to go to work at 5.30 (he does Friday and Saturday nights as he doesn't work Sat and Sun, also occasionally during the week if I'm too exhausted). This has been going on and worse for 15 years, over that if you inc the years prior where eldest was a toddler.

Have to watch DS until school transport picks up as even at 15 ywars old he cannot be left unsupervised at all. This includes feeding him, brushing his teeth, giving him a wash and helping him dress. Transport arrives at 8am-ish.

8am have a coffee and a little breakfast. It's difficult to sit and have a hot drink with ds.

Wash pots and put them away.

9am phone doctors and wait on hold for 30mins to be told they'll call at some point today. So, I can't mute my phone to get some sleep as can't miss the call.

Ironing- this can't be done with ds as he isn't safe around the hot iron. My other son at 15 was capable of using the iron himself and didn't need to be kept safe from it.

Any cleaning involving bleach/ chemicals etc. Again he doesn't understand so can't have these out while he's around. Also he has to be supervised at all times so can't do both together anyway. Pretty sure my other ds wouldn't be in danger around bleach and I could leave him at 15 to clean.

I need to complete the paperwork for his budget (we get 4 hours respite per week term time, more school hols) as the LA need to do an audit- this is on their time schedule not mine. Some parents may need to renew insurances etc for PA'S too (most 15 year old don't have this sort of associated paperwork).

Read the latest update from slt and ot. Email any queries and answer their questions about provision.

Any other housework type jobs if I can fit them in.

Possibly/ likely have a phone call or email from school, hopefully don't need to collect (picked up five times since Sep school year start and had lots of phone calls- he has full 121 and 221 when out in specialist school).

Organise activities for PA'S at weekend.
Eat/sleep/ shower if possible/ there is time/ I'm awake.

4pm Ds hopefully dropped off. Toilet/ wash hands/ feed him.

5pm dh comes he usually makes dinner while I do slt and some ot exercises with youngest ds.

6pmish try to eat dinner- remember ds can't be left unsupervised and requires interaction too.

Also try to take to eldest son, maintain a relationship etc

At some stage get him showered. Also possibly have an appointment for massage for him.

9pmish give ds meds

10pmish try for bed. Get up during the night to help ds.

Add into that:-

the ehcp paperwork. Yes it is a lot especially if you have to go tribunal or organise a pre action letter.

Annual review meeting

Other meetings with professionals/ school/ la/ wheelchair services/ special dentist/ dietitian/ optitions all of which require a social story and may take a few times to complete what needs doing or even a general anesthetic (ds needed for a filling- this took a hell of a lot of arranging and quite different to going to the normal dentist). All of these services think you have nothing else to do and ofcourse the appointments never clash. Throw into that someone using the one bluebadge space when they don't have a bbq because "they'll just be five mins" etc. So you can't park up.

Any training for equipment or ways to support ds. Getting equipment fixed or working out what to do while you wait for it to be fixed.

Also having the above reorganised either because of a clash, ds being ill or not able to attend or clinic change or professional off for some reason.

Food/ grocery delivery while ds is at respite/ school as can't be done with him at the supermarket and difficult if delivered while he is at home.

Additional activities at special school eg nativity, school fairs, cafe sessions etc these don't stop at high school like mainstream schools.

Having to find out the law around sen/ social care/ discrimination and how to navigate the frustrating systems. Non of which required for eldest ds.

Adaptations to the house/ visuals/ other supports (getting, paying for or getting a grant, having installed, learning to use).

Blue badge/access card etc renewal

Dla paperwork or when older pip/ their universal credit etc oh and organising a specific bank account fortheyn they become an adult etc inc meetings around transfer to adult services and their paperwork/ meetings. deputyship application/ law etc

Explaining why respite is required and we don't want to lose four hours a week (thats four hours where dh and myself can have time together without ds in reality we sit and or sleep unless school hols where ironing and cleaning etc needs doing).

Some parents will have peg feeding, injections, physio etc thrown in too possibly operations too.

There is no let up, it isnt at all comparable to having a child without disabilities. Many parents will be doing this until they physically can't anymore. Seriously imagine having a grown man that depends on you in the same way as a toddler forever with no let up. You can't leve them to make dinner, put washing on etc

There will be a lot missing from this list as I'm tired and should be asleep but waiting for a phone call that can't be missed.

Oh trust me, I’m aware of the effects of sleep deprivation.

Not every job is available, totally agree. But there would, if wanted, be something.

I have said a few times now that I actually think it makes sense to not work if you don’t want to in this situation. There is just a difference between impossible and not wanting to (for understandable reasons).

Also just to repeat. Many people will be justifying their own decisions by critising others. Op thos is about them more than you.

She possibly could (although only a few additional hours would cause her to lose her carer’s allowance, so financially it wouldn’t be worth it) but that time could, instead, be spent exercising, accessing support networks for carers or sleeping. Other parents probably get to sleep more at night time. Other parents can probably exercise with their kids about (family swim or cycle ride) or they can slip to the gym because they won’t bother DH whilst he’s working from home, or they can leave them in after school club for an extra hour to get a session in. Other parents do not need to speak to families that are going through similar things to deal with the pain, the hopelessness, the isolation, the humiliation or the trauma they have experienced or in many cases are still experiencing whilst parenting their child. They don’t need to get advice about what they could try next because their child just skips through life’s stages with minimal resistance and their pathway is clear. Other parents don’t have to get home from work and know that as soon as they see their child they are going to have to do 90mins of extreme de-escalating with their child before they can even begin to prep dinner.

But how long can you sustain this for? How much can you give to your child once you’ve finished work for the day?

@DonaldGumbo you have my full sympathies.

I do not want women to be forced out of the jobs market to be carers. I want employers to be made to be flexible and for the government to increase Sen wrap around, for both mums and dads. But whilst we keep rolling over and saying 'I can't work' nothing gets better and no women can advance.

But it won’t be women forcing change on employers. It certainly won’t be women conforming to male patterns of work including promotion criteria that force change on employers. It might help with sufficient women in top positions remembering that women with young children get shafted at work. Primarily it rests on government. I’m not holding my breathe.

Between us - whatever he needs. We don’t do less, IMO. We squeeze things into time that isn’t there and focus on him 100% of the time he’s at home and not at school etc.

I’m aware of how all consuming it is and can be, I won’t lie - it’s tough.

But we both intend to work for as long as possible, because selfishly perhaps that still gives us some semblance of independence and life, and we value the money it gives us to do things with.

If/when it does change, my partner will look for part time work around schooling and whatever childcare we do have. He’ll be a largely SAHD with a maximum of 20hrs a week of work, and I’ll continue in my existing role. I don’t envisage there being a point where one of us doesn’t work at all, certainly not for a long time.

To be honest I hate the term high functioning too. It just means that he is academically able, although this is a technicality because sometimes he will do fairly advanced maths in his head and other times he will lie on the floor and stim when he is supposed to be doing a sats practice paper. His teacher says that in most of the practice papers he gets really low marks. The questions he has answered he has got them all right but he has only attempted to answer 5 questions.

Technically my older 2 don't need supervision as such but they still need my undivided attention sometimes and it's important that I make some time for them when my 10 year old isn't around. Eldest may be working full time but he is still a teenager. I also avoid having them look after my youngest because that isn't fair on them.

Before having dc I used to work in a nursery but I couldn't do that now, probably not ever to be honest because it just isn't flexible enough. I hope that one day I will be able to be a TA but ds needs to be a lot more independent and sleeping through the night before I can consider it.

Dh does defend me when the in-laws start up their judging. They judge him as well. I've noticed that gradually over the years the direct judging of us has reduced and they complain more about the mythical families who have a massive tv and holidays paid for by the government (yes I know that doesn't happen).

I don't have multiple forms to do in one day (although it feels like it sometimes) but forms are not my strong point (I have dyslexia and the lack of sleep doesn't help) so I tend to spend one hour a day on them and by the time I have nearly finished one another one needs doing. So it feels like the form filling in is constant. Some of them are fairly easy like the SEN review forms but some are more complicated like the ehcp and the dla forms.

The OP wasn’t asking whether or not it was possible to get paid work outside the home. She is frustrated with being judged especially by in laws. Entirely justified frustration as judgement and withholding of approval is emotional manipulation and a form of control.

Someone once told me I could get a night job as I cared for multiple people during the day.

Was that you? 🤔

I think the part being replied to is that OP “would be more than happy to work if ds didn't need me to look after him.”

As I’ve said, I’ve got absolutely no issue with anyone who chooses not to work alongside caring for someone. I’ve done it twice now, and I’m aware it’s not for everyone.

The OP’s in laws might be thinking that work is possible and could “fit,” that may be where the judgment comes from.

To be clear, I think it could fit if everything lined up - but I’m aware that firstly; it doesn’t always line up; and that at the moment it may not be something she’s able to commit to, and both options are completely reasonable.

They should still mind their own business, and hold on the judgement, I was just explaining where I think it’s coming from.