If you're a carer and you don't work do people ever make rude comments?

[lottieandmia]

I've had to HE my severely autistic dd for a year because her school placement didn't work out. This means she is at home with me all the time currently (until Sept when she will start at her fab special school)

A parent of a friend of my younger dd keeps making comments about why I don't work. It's as if she has no understanding at all of what it's like to have a disabled child. It's hard for me to find anyone who is able to look after her if I did work because she is very complex. She is never going to be able to live independently, requires 24 hour care and is likely to need to live with me long after her (younger) sisters have left home. I am a Spa Therapist and really love working but at the moment I can't!

I was wondering if any of you have this problem yourselves and what you say to people. I really don't feel that I should have to explain myself to her.

She's rude. You don't keep making comments about anything another person does.

Sometimes I get 'you're lucky you can afford to stay at home', which upsets me no end. Especially when it comes from someone who though both partners work, has a massive house and lovely holidays and regular babysitters. They could easily chose to downgrade and have my life (minus the disabled child and the whole heap of stress and worry it brings) but I have no choice about whether I could live their life.

The next time she asks why you don't work, smile and look her right in the eye and say, "Because I'm incredibly fucking rich!"

Seriously though, she is being extremely rude and you owe her nothing at all.

I think this is a good one for the standard MN put down of "did you mean to be so rude?" (though I'd find ODFOD rather tempting, too!)

It's none of her business and if she keeps bringing it up, then she's out of order. Of course, you could mention to her that, if she's so keen that you should be working outside the home, then maybe she could babysit for a few hours. (If it wasn't for the fact that it would be unfair on your DD, of course).

Educate her - if you can be bothered. It sounds as though it will be worth it as she is a mum of your other DDs friend, so you are likely to come across her again.

I can honestly say that I have never come across anyone who asks why I don't work. In fact, I have had people who don't know me that well, but who know about DD, who tell me that I do have a full time job (when I say that I don't work), and they don't mean that in a patronising way.
A couple of my close friends occasionally joke about me living off benefits (I only get CA) whilst they work and fund it through their taxes.........but they really are joking (have known them for years - in fact I used to work with them both) and I know they don't begrudge me a penny of the pittance that I get.

My DD has a severe, but very obvious disability though so it is easy for people to see how much work might be involved. ASD is more difficult for people to understand unless they have experienced it 1st hand, so it is hard for them to appreciate how much extra effort goes in to life with a child with ASD.

Thanks for replies. I've just been feeling quite upset about it because I actually love working and if I'd had NT kids I would certainly have worked full time.

I agree Starlight - it's not a choice to have a disabled child. I think it is very true that people don't understand ASD but if they spent 10 minutes with her they would understand!

My younger dd and hers are not best friends although they have known each other a long time. Tbh if she has a problem with how we live then I don't understand why she keeps on inviting my dd over!

I get it all the time from family, why don't I get a part time job now DD is going to school in September.

I get really pissed off and upset too. It feels like a personal attack. DD has very complex epilepsy and its not controlled she also has a ton of other problems.

We literally can be in hospital at the drop of a hat but people don't get it!

I usually say I'd be happy to work but who is going to pay for the three or four people to fill the role that I already do? I usually add that I would find going back to work (I was a civil servant) a breeze in comparison to caring for ds and dd with autism.

That's just it - at work you have a lunch break that is total 'you' time. Caring for a disabled person is work.

Well I am glad it's not just me because it really does feel like a personal attack and can really get to me. I think I am just going to avoid getting into conversations with her in the future. Difficult if you get this from family though - they really should know better.

"Home help wanted, 50+ hours a week, must be willing to work 20+ hours a day. Duties include bathing, continence care, meal preparation, medicine dispensing/planning and general house duties,shopping etc, plus other duties as and when required.
Wages 60 pounds a week "

It does feel like people judge you for being on benefits. I've felt it before and overheard it. To even advertise a job like this would be illegal, yet thousands of people are working 50+ hours a week for 60 pounds! If all the carers decided to go to work and leave their loved ones to the "care" of local authorities it would cost 1000+ a week.
Unfortunately people don't see this and just see you "not working".

You have touched a raw nerve 5 with SN, 3 now adults 2 at school. When youngest started school "friend" said what are you going to do all day and she was serious
And also being old we don't get carers allowance either.
Some people are clueless.
BTW samithesausage our DS was costing £5000/week in a childrens home 9 years ago!

Arghhh!! This is a raw nerve for me too.

I have friends like this and I am honestly tired of ppl who made comments when I took time off work to look after DS who was disgnosed with ASD when dd was born ( great timing!). DS was at Great Ormond Street for some of his sensory issues and I was very stressed.

I didn't tell anyone about DS's difficulties as I felt like I was somehow letting him down if I told ppl about it. I finally confided in a friend about his difficulties and told her about his issues. A little while later she asked me what I did all day as a SAHM ??

Now I am back at work I am glad of the time off. For me , being a SAHM was much harder as it was more emotionally draining.

I think some ppl cannot understand anything they haven't personally experienced and others are just too self absorbed to notice the challenges of raising a child with SN. Grrrrr!!

Thing is, I have known this woman for about 5/6 years and it's only now she's started going on about it. Perhaps I am lucky that nobody has been so rude to me before this reading some of these things that have happened to all of you!

In any case, there have been threads on MN even (not SN board) which show how some people just don't care about or understand families who have disabled relatives to care for - people saying disabled children shouldn't be allowed in theatres and one lovely person who said we should all be grateful we get £59 a week for looking after our disabled family members. As you say, 2old residential care costs the tax payer much much more than it does to pay carer's allowance.

I used to explain about being awake all night etc but now go for ODFO.

I even had a staff member at DD new school asking me what I was going to do when she starts school to which I replied nothing much.

She then insisted that "I get involved" telling me that I would be bored and that I could do some work around school, which I said no to and then not taking the hint carried on telling me that I should still do something like pta type work.

I would not have thought much of this but this was the SECOND time she had insisted I would be bored at home and that I SHOULD be doing something !

By the by she does not herself have a child with SN but does work with them so she should know better than insisting on what I do with the time I have. I feel like telling her to go do one

I think people who don't have SN children in their lives have no comprehension of what our lives are like tbh. I know if ever I mention I am tired my dsis thinks I'm lazy because I don't have a job. The fact that ds has slept through the night less than a handful of times in the last 18 and a half years isn't considered an excuse.
It's not just the physical grind though there is so many battles to fight, so many things to consider, even leaving the house needs planning I feel that I don't have the thinking space needed to anything else tbh.

I'm a single parent as well as a carer and it surprises me how many people think I'm on benefits for being a single mum (DS is a teenager now so wouldn't be eligible for IS as a single parent but I get it as a carer).

I've had to HE him for a period although he's been back at school for a couple of years now. Still impossible to work though as childcare is nonexistent for SN teenagers with challenging behaviour. When he's at school that's the only chance I have to run errands/go to the gym/have a bit of me time etc, so if anyone is persistent about asking me why I don't work, I breezily tell them that it'd mean I have no time to go to the gym or get my hair/nails done