To be upset at lack of weekend help with SEN child

[Crochetowl]

I think I mostly need a rant.

I have 2 children, DS 6yo and DD 3yo. My husband works nights Fri, Sat and Sun. My son has severe learning disabilities with challenging behaviour. He is nearly 7 but developmentally he's 18-36 months.

This means that at the weekend, we are effectively trapped at home. I cannot safely leave the house with both of them. When I go out with someone else, my son needs reins and an adapted buggy. Even if I only had DS that would be challenging because he often needs physically holding; his behaviour and needs are very similar to Rosie from There She Goes for reference. With my threenager it's just unsafe.

DH likes his job, and if he changes jobs or his weekend shifts there will be a pay cut. But he works every single weekend, meaning we cannot ever go out as a family and I'm trapped at home - unless I ask FIL and MIL for help.

Leads me to the next problem: MIL and FIL are my only alternative childcare or adults who can help me get out of the house, or they will have my kids for a few hours so I can sleep. But now it's the summer. Out of the last 8 weeks, they've been away for 5. I know rationally that they're more than entitled to be enjoying themselves, but I've had a good cry today already as I have no respite. My son is frequently awake all night. He is in nappies. This weekend he's refused to wear them so I'm constantly cleaning up bodily fluids. They're amazing when they are here, but I dread the summer as it means a long stretch of no help. I don't expect them to help every weekend but I'm now on my 4th consecutive weekend stuck in.

We have a social worker who will hopefully help me to access a PA but that is not guaranteed. I just feel very abandoned. In laws keep telling me about the great weekend they've had again and all I can think about is "good for you, but you've left me to struggle".

AIBU to tell DH or inlaws that something has to give?

Op has said there's no holiday care available.....none

Same is likely to apply for weekends. It's not like she could just employ a teenager to babysit..

It sounds really hard, it might help to reframe how you see your week. You get three days off with childcare which is quite a lot of free time. Could you try to see that as your weekend and do some things for you on those days?
Could you ask your in laws if they could take you daughter out alone? It might be easier for them to take her along to what they have planned to do. That would mean you could go out with your son or just stay home but know your daughter has had an outing.
I don't think you can expect help every weekend though. They deserve time to enjoy themselves at thier age

This.

It's not your in laws problem as much as that pain you to hear.

Could you put some DLA towards some hired help? I know it has to stretch very thin sometimes especially when only one of you can work. If not, ultimately your husband's work might have to change, if you have access to more help on weekdays.

Sometimes I feel like I read a different OP to everyone else. You clearly appreciate what your in laws do, know that you can’t ask them for more, don’t begrudge them weekends away but are burnt out when on your own and can’t summon up the energy to be happy listening to their travel tales. Which sounds like an entirely reasonable response to me!

Obviously your child isn’t your in law’s responsibility. But frankly I know that if I were in your situation my mum would have organised something predictable - every other weekend for instance - and not left me on my own to cope for so long. If family isn’t going to step up and take responsibility, who is?

Sounds to me like your DH is avoiding changing his job because he knows he’ll have to do the hard weekends. Absolutely putting your foot down there is the only option really.

Would asking a friend or someone to take the 3 year old for the odd afternoon at weekends help with a bit of the pressure?

Have you both got access to some support as in a place to talk. Reading your updates is it a case he can't handle the idea of the full time weekends? Is he unable to admit this to himself hence the job excuse rationalises his fear?

Does the job allow him to live through others at a weekend?

It isn't fair but different people have varying abilities to cope. Sadly it tends to the mothers who remain the last person standing.

There is a real need for a whole societal improvement in support and practical care for all. I am sorry you are feeling so isolated.

So currently your DH gets a lot of free time to himself (and presumably with you?) as he is off work during the week. He hardly spends any time with the kids

Honestly OP this is not a practical lifestyle for your family. I wouldn’t be particularly happy with this working pattern and my DC do not have any additional needs.

You are on your knees with exhaustion, your DH needs to change his work hours. This set up is not practical for your family

However what will happen in the school holidays? Will DH will have the kids the 2 days you are at work?

I guess it’s because she works 2 days a week and thus exceeds the very low income threshold! I doubt carers allowance is going to fund much care anyway

I'm sorry but your DH obviously doesn't feel guilty or he would change jobs or shifts.
He finds the kids hard work so sees going to work as his get out clause without caring that you are on your knees.
I get it. I've got two children with additional needs. It's exhausting. I also work part time and just feel like I'm running on empty all the time.
Tell your DH. Tell him you actually must have a rest. He needs to take some A/L and use it to apply for jobs. Very few people want to change jobs, because change is hard but if he really feels guilty, if he really cares about you he will do it.
The current job set up doesn't work for your family so it needs to change.
As you said it's not really fair to expect your ILs to help when they can see their own son isn't bothered. I'm guessing you get on well with them, would one of them tell DH he needs to step up? Or at least tell them how close to the edge you are and remind him that they won't always be here.

I have responded now several times. As well as stating in my OP that I know its unfair. Back off.

Trained in correct techniques? We haven't been. Luckily we both professionally work in healthcare so we actually do, but so does our ILs. SEN parents aren't given training on this usually.

While I have genuine sympathy and understanding for how difficult things must feel for you, I don’t think it’s fair for you to expect a husband who struggles with his mental health to leave a job he is happy in for one he won’t like when you already get two free days in the week to have some time to yourself.

If you never had any time to yourself then I’d agree your DH needs to arrange to be at home more but it doesn’t make sense to take a pay cut when for the majority of the year you have good support from your lovely sounding in laws.

You need to push harder for access to respite. Talk to someone at your school because they should be able to help you fight for it.

I said he doesn't like change as a criticism of him, not as an excuse.

If she works two days a week she will likely earn over the threshold for carers allowance so probably cant claim.

She hopefully is claiming DLA but often the difficulty is finding someone to do the care, not the funds as such. There just arent that many PAs and carers who can cope with significant needs out there. My friends been advertising for years and has only managed to get someone one saturday a month. I never managed to employ someone. i do know others that have so its still worth pursuing but its not as easy as it should be.

I also think keep on at the LA for short breaks, respite and so on.

@FloweryName but the father does not do any care by the sounds of it. He works 3 days at the weekends and has all week off with both kids in school/ childcare. That really isn’t fair and it’s not on the mother to do all of the care. What about her mental health? It’s his responsibility to the children he fathered to do some childcare. Days off during the week are all well and good but not much help if there really needs 2 adults for much of the time at the weekend

You can only claim that if you are unemployed, or essentially on very low hours, and I'm not. We claim DLA but we need that to supplement my income allowing me to work part-time so I can care for my son at the weekend and during the week.

Some asking about my family - absolutely not. They've only met my children once, and I've stipulated in my will that they must never go to their care, as they were abusive to me as a child.

I've said before about weekdays - changing to weekdays won't be the same as kids are in school which gives me time.

2 days a week all to yourself is quite a lot, can you use those days better to recover or gear up for the weekend? Make sure you're making the most of all that 'you' time to get what you need.

He gets 4 days a week at home to relax when the kids are at school.

I get 2 plus the slog of the weekend. My mental health seems to come last, even in your post.

I've had to give up my career as an English teacher. I don't think I'm asking a lot for him to change his shifts even if he stays in the same job.

Then this is exactly what needs to happen.

What does he do during the week?

If all your kids are at school then it seems he’s only caring for them after school.

I can see why he might not want to change his job but would he compromise and instead of say doing fri, sat and sun night could he change to thurs, fri and sat night.

He may get less money but right now his shifts do not work with family life and so something needs to be changed.

Sorry just cross posted with you.

I agree that he needs to change at least 1 shift.

As a single parent I am unable to do some jobs and that is just part of life when you have kids.

Is it ok to adapt only one room for your disabled child and try to entertain him only there, with everything covered in plastic sheets, mats, etc so it is easier for you to clean ? Obviously I do not know the behaviour, is it very unorganised, running around etc ? If he is in a wheelchair or buggy then he does not mind staying at place for certain amount of time? Are there any settled activities he likes?

Doesn’t he do childcare during the holidays to make up for doing less during term time?

This sounds really hard but also an usual set up in the circumstances and one which benefits no one other than your DH. Is it really the case that he gets the whole week off and then works/sleeps during the most difficult times for you as a family? It also seems to have a disproportionate impact on your DD who has no adult 1:1 time. Even if you keep going as you are now, when she is in reception, things will have to change so that she can go to birthday parties & extra curricular activities.
Could your DH do three night shifts during the week? That would probably help his quality of sleep during the day as the house would be quieter. You would also only have to juggle the school run and post school period by yourself and then DH could do that on the two days you work. That would leave your weekends when you could tag team each other but also try and take a divide and conquer approach.

What about the ops mental health?

He gets plenty of time to himself. Twice as much as the Op.

You say ‘who will step up of family won’t’ why does that not include the father of the children?