I'm a parent carer and I'm constantly being judged for not having a job.

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Hi all,

I have two dc, both with sen, my eldest has some quite complex needs whereas my youngest needs are less severe.

to put into context, DS has just started a mainstream secondary but the school cannot meet his needs, he's there highest need students in the whole school and we are going to fight for him to get into a sen school, there's lack of places in my area. He has an EHCP, gets DLA and I get carers allowance. Dd also has sen but no official diagnoses but has an EHCP, currently waiting for DLA decision, but coping okay in mainstream primary.

currently we are dealing with school refusal with my oldest. He's autistic, adhd, has anxiety, ocd and severe learning difficulties - he's not even accessing the curriculum at secondary and working at year 2 level. His behaviour is challening, he is very defiant. I could be needed at the drop of a hat at the school, we have school meetings regularly. He's just been prescribed melatonin as he was not going to sleep until midnight, now he's going to sleep earlier but he's up at 4.30-5am. I am exhausted. He's not liking his new school and the school aren't needing his needs. I am tired of fighting for the right support.

as well as this in dealing with my own MH issues and being referred for an asd assessment myself.

I don't currently work, I struggled to find a job around Dc, their needs, school (I need to be here when DS gets off his transport as they wouldn't drop off anywhere else apart from home) , appointments, school meetings etc.

Dh works, he works 6-6. He provides for us financially and is a great hands on dad too! He is not in a position to cut his hours, he enjoys his job and its pretty well paid. But I'm the default parent doing all the organising, cleaning and getting them to school etc.

the only time I could commit to a job is evenings but I am by 5am each day, it would make the days incredibly long.

it sounds like I'm making excuses but I'm really not. It's just not feasible.

anyway, I am constantly judged whilst not working - by friends and family mainly. Being asked what I do all day, being told I am a lady of leisure because I don't have anything to do all day - yeah right! In laws are the worst at it! Dh has no issue with me not having a job but they do. My family are generally a lot more supportive but my brother always has something to say about my life.

I'm not sure what the point of this post is. Maybe some support? A hand hold? Or maybe I'll be flamed.

but I am exhausted. We have no family support. Me and dh have not had an evening together alone in 7 years, we are physically and mentally drained. Our kids isn't as rosy as people think it is. My MH is at an all time low.

I am fed up of feeling like a failure!

posting this after a sarcastic comment was made my mil this morning about my employment status.

people just don't get how tiring it all is 😭

his new school is calling a review asap and going from there. I think the primary's precious senco is partly to blame, she wasn't great at her job and things were missed. He is going to school most days at the minute - usually after 3 hours of screaming trying to get him ready and almost dragging him out the door to get into the taxi! Year 6 was worse, he missed quite a few days or consistently late. Seems to be phases. I think the novelty of the new school helped for a month or so, but the last couple weeks he's been refusing to get dressed and get ready in the morning. I have to force his clothes on and get him in the taxi! 😭

I'm a parent carer too OP but we've never attempted mainstream with our dd. She has severe learning difficulties, entirely non-verbal. I can't imagine having to deal with judgemental friends and family in top of what we already have to deal with.

Frankly, what are they bringing to your life in a positive way? What is your DH doing to stop his parents doing this? Raising a child with SN is a huge toll on parents mental health as it is without other people stamping all over what's left. I personally would cut contact with anyone that is making what is already hard work, even harder. Why isn't your DH standing up to his parents??

The only reason I could work once dd was past 10 (wasn't too bad before that) was because my employer are saints! I worked 15 hours a week, they allowed me to leave to fetch her (2-3 times a week) and bring her to work as required (discovered bringing her to work rather than going home when school called me to fetch her reduced to incidence of her problems, she's autistic but also manipulative and clever!)

Admin roles like I have make working possible and was something for me to do that wasn't home and medical forms!

I lost 2 jobs before I found that employer. She's an adult now living semi independently, autism isn't linear in it's course, around age 20 things changed a lot and the blackouts reduced almost to zero

Might it be worth having a direct conversation with your in-laws about this. There is no need for it to be confrontational. Tell them that you've noticed that they have made a few comments that suggest they think you should work and that the comments are bothering you and making you feel bad even if that wasn't the intention. Id then explain, very thoroughly, why you can't work. Id finish off by really clearly saying that you would be grateful if they are careful not to make comments like that in future. If your husband was there it would be better.

I'd keep it friendly and polite although I know the usual MN advice for this type of thing is to go NC or to go in all guns blazing.

Next time they send a passive aggressive jibe you way, look MiL in the eye and tell her that unless she starts to lend a hand, she has no say on how you and dh choose to manage your lives.

Then tell dh that you don't want to see his family anymore because they are eroding your confidence and mental health.

They are the problem, not you.

Fuck that! Awful woman, she has no empathy.. I'm glad you don't bother going over anymore. You'll never change her mind, so change how you react to her.. if she ever makes a comment just say to yourself "people who say stuff like this are miserable inside" Tell DH not to pass on any negative comments to you. You are amazing ♥️
My friends boy sounds similar to yours and he thrived at a specialist school.

Solidarity from me, OP.

I'm lucky to never have felt judgment from family etc but my situation is/was similar to yours. I have occasionally said to people who asked about my going back to work "in the last four weeks I've taken DC to seven hospital appointments. All were within working hours and four of them were more than an hour's drive away. Would you employ someone who had those sorts of committments?"

I have actually recently started a part time job, but can only do that because
a) as DC have got older (14 and 17 now), things have calmed down a bit
b) my employer is great and I was up front about my situation before I started
c) DH is properly supportive and adjusted his work to help
But I'm finding it very stressful nonetheless.

I do think though that even the most supportive friends/family still have no idea what it's actually like to live this. A few years ago I was planning a rare day out with my sister, who is probably the closest to me and DC etc. At the last minute her dd, who was visiting from away, said she'd like to come (no problem) and dsis said wouldn't it be lovely if we made it a night away? So that's what they did. Obviously I couldn't go. And my sister KNOWS, as much as anyone who doesn't live in this house can, what it's like for us.

So I think that is something I have just had to come to terms with, and maybe that's something that all parents of DC with disabilities have in common. No-one except you and your DH really know the demands on you.

My youngest is now an adult and I've been a parent carer for decades. I just thought I could go back to work when there is another crisis and I'm firmly back in carer role.

If you can be it's so important to be at home in your carer role. It's exhausting, you can't work alongside.

I'm sorry you don't have their support & just have their negativity.

I wonder if they be different if DS was your DH's?

Your DH needs to up his game & be FAR more supportive of you & put them
bsck in their box properly when they make comments like today on the phone.

He could also thank them for their support and tell them he's sure the school bus would be happy to deliver DS to them of an afternoon & you can drop DD of after school until DH can pick them both up. It's great of them to offer to be 'first contact' for school.🙂

then when they back away quickly, DH needs to tell them to step up or shut up!

You need to protect your mental health and they are impacting it badly. They provide no help or support to you. Go low contact if you need to and leave DH to deal with them or visit them. Some people will never get things.

Your DH may have tried to talk to them but does sound like he needs to be a lot firmer and possibly even confrontational if they still can't get it. "Dear Mum and Dad, me and DW have realised you will never be able to comprehend what DW and I go through every single day without break. I'm telling you and not asking you to drop all the snide comments or suggestions that DW is lazy and could contribute more/ should get a job which she would love to be in a position to do. If you can't do that, feck off."

I have a friend with two sons - one very low functioning autistic and the other higher functioning but still with autism traits.

She doesn't work, I work full time, but I'm in no doubt at all who works the hardest (and it's not me).

I take my hat off to her and to you OP and to all the other parent carers.

Thank you everyone. Cannot reply to all individually, I'm glad I'm not just being a drama queen.

mils partner is not dh's dad, dh does not even consider him a stepdad as such they met when dh was in his twenties, but the 'stepdad' has still made comments. Ironically he hasn't seen most of his kids for 30 years, since they were small, ditched another child when the child was a teen when he met mil, never met his grandkids but seems to pass comments about my parenting. But I could say something back to him but I choose not to.

I honestly don't think mil is very accepting of anything like autism, adhd etc, she's quite ignorant, DS is not her bio grandson but I've been with dh since DS was 18 months old! Also, the Dd I do share with dh has sen too, not as significantly as DS but the gap is widening between her and her peers as she is getting older! I haven't spoken about Dd much, but she has speech delay, she has delayed gross motor skills, hyper mobility, learning delays and some traits of adhd but finding it much harder to get a diagnosis.

Be confident in your own decision to stay home. It's nobody else's business even if your dc had no special needs. But with appointments, disturbed sleep etc It's important for your family including your dh working that you are both coping.
The two most tired looking people l know are two mom's with children with autism who are particularly high need. In one situation the dad stays home as the mom had the higher salary. But they are both wrecked. If you are confident inside nothing they say will make a difference as its only their own ignorance. Keep your head up..you are doing fine.

Your MIL sounds horrid. Being an unpaid carer is full time work and for less than £10 a day.

Just wondering who will care for your MIL when she's old and unwell?

What bastards, you do work and hard by the sounds of it.

You already have too much to think about, without giving your inlaws head space.

Hi op, I too have an older child and younger both with DLA. I am a stay at home mum and get carers allowance. I would love to work and spent a long time building a really good and well paid career but when you have sen children you cannot easily access childcare. The kids are much harder to look after and simply can’t cope in childcare or school for that matter. It can feel stressful and suffocating to look after their high needs 365 and yes a bad night makes it so hard to do all the jobs the next day. I too am lucky with a well paid dh who agree that one of us needs to be at home. When you have two children with Sen you are mostly trying to juggle appointments medical and school and preparing for them. You are also researching their condition etc. School in my experience don’t have the expertise to be helpful and don’t tend to be honest with parents they can be defensive and primary senco don’t really need much training. If you get a job then you will lose your carers so you won’t be on much more money than you are now. Very very flexible part time jobs are rare. You need your time for all the stuff you need to do and also for the self care that is so essential to stop you from simply going mad. You need an hour a day to go for a coffee or a walk at least. Tell your mil to shove it up her arse.

It's horrible how our culture means that typical women's work is completely devalued. Caring for disabled children is such a challenge. You don't have to justify yourself. It isn't up to you to educate your relatives either.

Going to work would be a lovely break for you. If it can't or it won't work for you that is OK. If you wanted an occasional break you might be able to get a few hours on Bank as a dinner lady at a primary school. The pay would be next to nothing but it might fit around your children and give you a sense of self esteem and a chance to mix with other adults.

Thank you everyone and hugs to everyone in similar scenarios! It really is exhausting!

I've also had this as I had to give up my well paid job. I also became a single parent out of the blue and have no contact with ex (his choice). It's only now that my DS is finally (🤞) settling at secondary that I can see a chance to build some sort of life for myself. However, he can't be left unsupervised and I have to take him to and from school. Fuck anybody who comments on parents dealing with a disabled child.

The next time anyone comments on your employment status, just say "you walk a mile in my shoes for a week and then come and tell me how you would fit a job into everything else that's going on". People who do this are very ignorant of the incredibly challenging job that is raising SEN kids. I am sure you are an amazing mum whom your kids completely rely on. THAT'S your job. And that's all that matters. Sending hugs❤❤

Ty! If anything it seems harder at secondary when your children need you home, primary's often have breakfast and after school clubs, secondary schools don't tend to here? Not sure what the norm is elsewhere. I guess many secondary age kids can let themselves in buy for many children that is not safe or practical. I won an appeal for my son to go school in a taxi (rather than public bus) and I literally have to be here when he gets back which makes getting home with my youngest a massive rush!

Thank you all for your lovely replies 💗

I'm the same. I was supposed to be starting a career I've always wanted to do. Eldest was diagnosed with multiple things and thought I'd still manage. Said child doesn't sleep through the night at 8 years old. Made it impossible. I'm now her carer.

My second Son is now in the process of being diagnosed with numerous conditions and my partner has recently got over Cancer. I'm knackered and paid the grand total of £67 a week when I could of been earning ten times that. It sucks and I'm so tired and so drained. And it drains me even more to constantly "be on guard" for school pick ups at short notice, numerous appts. Or kids just simply being off school a lot.
Honestly never ends.

Yanbu. I'm a LP and only work 3 days a week with teens. My youngest has school refusal and MH issues. I'm a zombie as it is, let alone adding two other working days to ny schedule. The tax credits I get keep my head (and my dc's heads) above the water.