To be fuming DH is working AGAIN!

[SENSummer]

I’m going to caveat this by saying I’ve got a fever atm and more irritable than usual.

We have two small children one of whom is severely disabled and high needs. There’s no childcare for him. Please don’t suggest how I could gain childcare trust me we have been down every single route multiple times, including a SS. I was forced out of work due to lack of childcare something I neither wanted nor have enjoyed.

I’ve not been able to take up any hobbies, sports or classes that require my physical presence somewhere as DH has an all consuming job, he rarely finishes on time, rota is constantly changing and is basically just not in any way reliable childcare. Fine. He’s worked all my birthdays and mother’s days the last 3 years, he’s worked all last Christmas. I’m not precious about it and I’ve got on with it.

Anyways, I took up a hobby I could do quietly from home whilst still being on call for everyone else’s needs. Once a year there is a competition locally and I’ve entered it every year since having the kids. I do quite well and my rosettes go on the wall in the kitchen, they give me my self worth through the year. They’re the only thing I really achieve ‘for me’.

DH told me months ago he was working the entire weekend of the competition this year. I asked him to find a way around it, swap shifts…etc he cannot take holiday during that section of his rota. He said he would. Today he’s told me he’s not been able to and is unlikely now to be able to. I’m gutted and full blown sulking like an actual child. I just keep thinking about getting through another year without the little bit of pride seeing those rosettes brings me in the lowest moments.

When I worked as a SEN TA, lots of the other TAs/teachers used to do advocacy nannying work for the families. Maybe that’s an option?

It sounds like the not having a life outside the home rather than the hobby specifically is the issue here.
You mention wanting to have both considered going part time, what was the justification for you being the one to stay at home? Although if you were both part time then I don't think you would have enough holiday entitlement to cover holidays, which would cause you further issues if you say you have no childcare/family options.
I don't know the extent of your child's needs but have you had counselling at all to come to terms with coping with their disability in the long term as I wouldn't want to try and understand how it feels to be in your situation.

In terms of the hobby, is it something you can submit via a friend or by post rather than needing to attend on the day?

OP - my mum was you in this scenario. Had to give up work to look after a severely disabled child, while my dad worked 50+ hour weeks to make ends meet, working evenings and weekends. My DSis went to a special needs school, but it was only school hours, with little other support available, so it was impossible for her to work or have a regular hobby outside of my Dad's erratic working hours.

It is shit and you're right to be upset about it. It does sound like your DH has tried, but you're not unreasonable to be disappointed and sad.

Although this was in the 1990s, we were "fortunate" to be able to get respite care for my DSis whereby she went to stay at a (for want of a better description!) children's home for one week per year, which was our chance to go on holiday (as it was too complicated to take her). It was only available in term time though, so we had to take me out of school to go.

We were also put in touch with a local charity who offered specialist babysitting services, so we could go out one evening a month and someone would stay in with my DSis. It was always timed for after she went to bed and realistically wouldn't have needed any input, but they were fully trained in first aid, etc, and CRB checked.

When I was older, I was able to take on this role so my parents could have a night out. I'd get treated to a takeaway and a Blockbuster video of my own choosing as payment for my service (though thankfully by this point my DSis was a good sleeper and I never actually had to do anything!).

It's tough though and it nearly broke my Mum. Unless you have a high needs child, you don't appreciate how difficult and all consuming it is.

When my DSis was 16 she moved to a residential SEN college and after that she went straight to a care home where she's been for 25 years now and is very happy there.

It gave my mum a new lease of life and she was able to return to the workforce then. As she was (in today's terms at least) a young Mum, it then meant she had another 25 years of work before she retired. Her and my Dad are due to celebrate their 50th wedding anniversary later this year.

I know at the moment that must all feel like a lifetime away for you, but I wanted to share her story to show a positive and happy outcome all round.

In most jobs you can’t always just book annual leave

what a terrible idea. I’m outraged anyone would suggest this. Imagine if it were the woman working & someone suggested this

The problem is when someone can’t book any leave despite been asked way in advance AND in a background of working all hours, putting their career first etc etc…

The crux of the matter is that this isnt just about a single competition. You recognize the deeper problem and your extreme vulnerability with the division of labor that has emerged given the reality of caring for a SN child.

If you were a different household I would advise you to put your child in nursery and get yourself into education and then to work. We both know that isn’t going to happen right now and I’m not sure how it gets better.

you mentioned age 8 as being a key point for respite care. I’m guessing that age opens up options in general a bit. Will your child likely be attending a physical
school consistently by that age?

I’m wondering if now is the time to think about what jobs you might realistically be able to do when your child is a bit older and explore online training.

you have probably thought through all of this. You sound remarkably self-aware compared to the average poster .

I just want to say I know, OP, it absolutely sucks. Hobbies are so, so important to people who are at home for good reasons. I’m 54 and never had a career, which is something I still can’t quite believe.

My hobby has saved my sanity and my relationship a few times. In a similar situation I’ve entered an art competition by asking someone to attend on my behalf, it was someone who was exhibiting themselves so it wasn’t much of a favour to ask, all they had to do was take my piece down at the end of the day and take it (and the rosette!) home, for me to collect another day. The artworks were submitted a week before and put up by the organisers so that was easy and the other club members showed me clips of the judging and told me about the day.

You don’t say what it is but could this work for your competition?

That might be the worst advice I’ve ever read on here.

I really empathise with you as I felt trapped in a similar way when I was a SAHM to 3 young children, 2 of whom had physical disabilities, one of these severely disabled. I did finally leave the marriage and the freedom came when the children were with their father. All of a sudden he had to parent - I’m not suggesting at all that you should do the same, but I just wanted to say, tell your partner how utterly miserable you are, and ask him what he would do if you left him and he had to parent 50:50? Put it into some perspective for him - yes he refused to go part time, but only because he knew you would take on all of it. But what if he HAD to ie what if you left. Maybe then he can actually look at factoring in regular breaks for you, and opportunities for you to breathe. Sending you some solidarity 💜

This, l feel your disappointment but your DH needs to keep his job as he is the breadwinner.

OP wants to work but he wont compromise and drop his hours, so i don't think this a reason for him not bothered to sort one singular day off work.

It’s really hard when you have an SN child and absolutely no childcare. Been there and done it with a husband that worked/works 7 days a week. My disabled son is grown up now and not at home but when younger was funded 40 hours a year respite but there weren’t any providers that could accommodate any hours at all let alone 40 so I really do understand how hard it is. I’d be annoyed too. Your husband had plenty of time to sort out time off.

Does that mean he can't organise a day annual leave so the Op can go to her event?.or do "Breadwinnera" get final say. I think that's vastly unfair and selfish.

I have a disabled son & have also been told that respite will not be an option until he is 8z.

As for a private arrangement - we’ve advertised for the past 3 years & only had a handful of applicants each time - the one person who we did eventually employ left after a few sessions, it’s really hard to find childcare for disabled children where we are.

He is not allowed to book AL at this time!

I know it's not easy 😥I am just pointing out that you can get private Nannies/respite from babies up, they do exist, even if not in abundance. I wouldn't want people to think it's an absolute they can't (they don't exist).

it makes me sad I can't work at the moment (or maybe ever again😥 as I know how few SEN Nannies there are & I miss the kids/families)

I honestly believe that he did not try hard enough to take this day off. I have a decent job and I have lots of friends in high-powered roles and more ordinary jobs. If people really want the day off, they can take it, especially if they plan so far in advance. I’m sorry OP. You deserve better X.

I don’t have any experience of life with disabled children. However, I would assume that somebody with a child with special needs is more than aware of the concept of respite care. I find it really irritating when people suggest respite to parents who will be well aware already of what may or may not be available, as they are living that life. Also, you don’t need to have a disabled child to know that accessing respite these days is exceptionally difficult anyway. Sorry, it just annoys me.

When you have a job that pays well people expect you to work for that pay. I've had one of those jobs and that's the way it is: you get paid really really well, and you are expected to be available - and that is fair enough. Sounds like the OP's husband made an effort and tried to get the time, but high pressure jobs have high pressure expectations. When I was a trial lawyer I would have "fire drills" that had to be handled - and that was the trade off for having a great paycheck and a job that was endlessly fascinating.

Sounds like a really difficult home-life situation. Also sounds rather odd that the ONLY child care option here (with the OP being rather snippy about it) is for her or her husband to look after the child. I have friends who have children with significant health needs (one is 4 years old) - including all manner of invasive medical procedures etc that have to be sorted out every day - and the little chap cannot feed himself or indeed do much of anything for himself - plus has seizures - so it's a hard core constant state of being on edge. They have brilliant charity contacts, and also private carer contacts, who help with respite care a lot. even if it's just for an evening so my friend and her partner can go watch a movie, or just evening stay in and have some time where they can have a few hours together. I mention this not really for OP's benefit (she's already rejected the idea) but more so in case there are other parents reading this post who are going to be/are in a similar position and are worried that they will just be "stuck" not being able to do anything but be a carer.

Also sounds like there are bigger problems underlying this situation than just someone wanting a weekend for a hobby. It could well be that the husband is using work as a form of refuge from home with a partner who really cannot stand him, for whatever reason (valid or otherwise). And the OP is fed up entirely with the entire situation she finds herself in: hopefully you you have a therapist/counsellor to help you with this big mixed up state of resentments/grief/anger/depression etc. Because ultimately the child deserves to be living in a place with caregivers who love them, not a home where there's a palpable sense of drama. Hopefully things get better.

This is absolutely atrocious advice!!!! Do not EVER call your partner's work and do this - absolutely mortifying! This isn't a case of a mum calling a school and asking for their kid to take the afternoon off for a doctor's appointment!!! This is someone's professional career we are talking about!!!! Never, ever, call your partner's work to do something like this. Ever.

This is not on. The mention of him saying his career is more important than his family tells me a lot.

The man needs to stop being a selfish twat. I don’t believe for a second that a man who loves someone (especially someone as important and strong as you are) wouldnt find a way to make this work

And I know someone with a child with complex needs (and a life-limiting condition) that the parents could not access any respite for. All the agencies agreed the child met the criteria for respite, but the child was too physically active for hospice care, and they were unable to recruit anyone who had the needed level for home care. We're in a semi-rural area which also adds to the difficulty. The OP isn't being snippy, it's HER experience. It's really over the line to suggest the OP doesn't love her child, and being damaged by palpable sense of drama.

I am sorry but I dont think that a man who has made it clear that his career will always come before his wife and children, one of whom has extensive disabilities, is good hearted or a good man.

He sounds selfish and thoughtless at best.

Is he a surgeon? On the phone to DD who is in medicine and she asked. She said he sounds like almost all the male surgeons she works with.

The more important question is: why is she still married to/why did marry/have multiple kids with a man who has "made it clear that his career will always come before his wife and children." If he had the career before the marriage or the kids, and made that viewpoint clear prior to having said wife and kids, then the wife was on notice that that the career was his primary focus. And she still decided to marry him and have kids. Sadly that happens all too frequently: people don't listen to the people they are dating/in a relationship with, and expect their priorities to change. I know of women who have gotten knocked up (failed to take BCP/used "damaged" condoms etc) because they think if they get pregnant their husband/partner will focus less on the career - even though the partner has made it clear that they don't actually want kids. Crazy, right?? But alas it happens all too often - my therapist friends have to deal with this very situation a lot.

Note you making generalisations about male surgeons: how on earth does your child know what the male surgeons are saying to their partners? Or is she assuming that people who are dedicated to their jobs and work the hours they are told to work must not put their jobs before their wives/kids?? One of my best friends happens to be a male surgeon - he's also a professor of surgery. He works incredibly hard. He also is absolutely smitten with his wife and child. He works long hours so they have a beautiful home and his son can go to a lovely school. His wife also works - she would go bonkers if she was a SAHM. Their child is one of the most darling, smart, cool kids ever. They have an awesome family dynamic. Another friend - also a surgeon - has a child with developmental illnesses: he and his wife also work darn hard - and they have a brilliant time with their kiddo (who goes everywhere with them - and his dad's well paid job means he can have a medically trained nanny whenever necessary - especially when his parents need sleep. The takaway here is that both these couples were on the same page from the get go about marriage, careers, and children. From what the OP has described that simply isn't the case in the relationship she is in.