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?

It’s evident you are struggling. But to specifically produce a child to “keep an eye over” an existing child with severe disabilities - what impossible, even if unarticulated pressure, this child will be under as she grows up. No, you can’t change what’s already happened but You really need to work to change this mindset. Entirely. I am now awaiting yet another “Fuck off” comment from you - as evidenced by your responses to other posters.

You can’t bank on her looking after him when you are gone.

That’s massively unfair.

and I say that as someone with a son like yours.

Also as you probably know - provision for the severely disabled is an unholy mess with personalised budgets to buy in services - which in theory sounds good but the reality is that services that are needed such as residential respite are now scarce and complicated to access - however it is what we have to work with and it can lead to satisfactory outcomes if you just never give up. My ds is about to move into supported accomodation soon and yet we were told constantly by all involved that we would never get respite let alone residential when he was 7 ! He started at respite when he was 8 .

Thank you so much for your post.

I have been surprised and unsurprised by the level of aggression. Lots of people here have a chip on their shoulder I think.

The ILs have said things like "well they're you're kids at the end of the day not ours" and "well DH is struggling mentally and he has got a good job there and good hours that work". I'm frustrated as DH listens to them as well and no one has been advocating for me. Lots of people failing to understand.

The only social contact I have is with a few non parenting friends apart from them.

People asked about SIL. No they cannot help. They have 2 of their own severely disabled kids - can't ask them to look after mine as well.

Your dh is actively choosing to avoid his own difficult family situation by working.
He finds it hard for a few hours hours after school when you are home too but is happy to let you struggle for 2 days on your own.
I would have lost respect for my dh in your place.
As usual it's a dh problem.

Thanks for your unnecessary opinion.

My son developed his neurological problems making him go from slight delay to severe after she was born. Unless you've been in my situation, you cannot judge.

Would you be comfortable having a SEN child with severe needs, no ability to communicate, knowing they'd be at the mercy of social services with no family to advocate for them once you've gone? Answer that and take a long hard look at yourself.

Have you approached the Challenging Behaviour Foundation? They are a charity set up to provide information and support for families just like yours. Google them for contact details.

@Crochetowl I'm so sorry you seem to have taken so much heat in this post. Although I am not in your position I can imagine it must be isolating at times. Please speak to you Social Worker - services are under pressure but they should support you with an allocation. If your son has a particular diagnosis then have a look to see if there are any local or even national support groups - often other parents are the best tool in your arsenal as they can draw on their own experience and lend support. I would also see if there are any disability advocates in your area as they may be able to support you with accessing social care. Please keep on at your social worker though - they should be putting a support allocation in place and if your son has not had an assessment of need then request one or request a reassessment if his needs have increased since the original assessment xx

We’re all responsible for our own households. DP needs to look after his family’s needs - does he want you all miserable indoors? Is he working weekends to avoid the efforts involved at home and leaving them to you?

In-laws have done their decades of being responsible for children. If they have been helping with the next generation too, that’s amazing and all the more reason they should have guilt-free holidays.

Can’t believe some of these responses. Of course your DH is being unreasonable. He has twice the amount of time to himself to relax as you do (he gets 4 days, you get 2) AND he doesn’t ever have to manage the weekends alone. Not even one day. He is being selfish and also not prioritising your daughter who presumably doesn’t enjoy being cooped up all weekend and unable to go out.

Could he swap to Thursday Friday Saturday? That would be more than enough of a compromise on your part but allow you one day on a Sunday where you could do something together as a family.

Quite frankly it doesn’t matter if he’s depressed. He’s not severely clinically depressed otherwise he’d be unable to work or engage in anything else during his 4 days off which doesn’t sound to be the case. So he needs to pull his finger out. DS is as much his responsibility as yours. Alternatively of course you could split and then he’d have the children half of the week… wonder what he’d do then.

Oh and yes I agree you can’t be cross with the ILs for going away (I know you’ve already said you know this) BUT they could be a bit more sensitive, they must know you’re having a shit time when you’ve got both kids all weekend alone so the last thing you need is to hear all about their wonderful relaxing weekend. They can wax lyrical to their friends or whoever but not to you.

About the in laws - any help you can get will be great but I have seen situations where the gps have taken the disabled child every weekend but then reach a point in the child's teenage years when that is no longer possible. The family also find that social work are uninterested as they take the view that 'oh well you've coped til now' . You need to build up your reputation with Social Work from a young age. You will be better off in the long term if you confront Social Work about their long term responsibilities - in theory they have a legal duty to assess and meet the needs of a disabled child - keeping them on track with that is tough but do able !

My husband also works a lot of weekends and over the past two years it ramped up to every weekend.

He managed to negotiate working 2/3 weekends every month which is still shit but it's the nature of his job sadly.

I only have one child who is neurotypical and it's still hard! So you have my completely sympathy there.

I also think your in-laws should help out more under the circumstances. Even if it was one weekend per month it would make a huge difference. I'll never understand the rage it seems to cause on here when that is suggested and then you have the choruses of "you're selfish, you can't expect ANY help and you just need to get on with it...............what happened to families supporting one another?

I also agree that your husband seems to have checked out and is working these shifts to dodge his responsibilities. That really should be the main focus - he needs to do the right thing for the family and stop putting his own needs first.

Does you LA offer shortbreads in its SEN offer?

If you in laws are pointing out that it’s not their responsibility to have your children, someone has obviously voiced that it is their responsibility.

Sounds like they are telling you in a roundabout way they can’t cope.

Your husband using their opinion to leave weekend care up to you, is still a problem you have with your husband. Not them.

It is shit when you feel you need someone to advocate for you and there is no one. Your dh is the one that should be advocating for you. Advocating for his whole family. And working out what’s best for you all.

Forcing you to sacrifice your own mental health is not what’s best for the whole family

@froidIci to be fair you deserve a fuck off to question the OP's decision to have another child

Your husband is being an utter selfish prick of a man. He’s deliberately checking out of weekends while getting 4 free days a week. He clearly does not care about you at all!!
I’d leave him, I could not respect or have any love for anyone that would treat me do badly.

You need some weekend respite. Get onto your SW and tell them you need respite care or you will have a breakdown. Do not make out you are coping when you aren’t.

I have no idea how you are managing to cope. Huge hugs to you.

I get how you feel. I have one with SEN nowhere near as severe and I am limited to where we go, (outside places only where there are very few people) very limited but we can go out. If you’ve not been in the situation you can’t understand the relentlessness of the weekends.

Possibly the answer is for DH to work 3 weekends a month and if in-laws wish to have an opinion on DHs working pattern they should offer some help.

Thanks for the reports on this thread.

Discussions like this often get heated but we'd like to remind you that Mumsnet is here to make parents' lives easier. While we encourage healthy and robust discussion, we hope that everyone can respect each other in their choices and express their views without resorting to personal attacks. We're sure you'd all agree that parents need all the support they can get. After all, parenting is hard enough without facing judgement and criticism for those choices.

Peace and love😀

It always shocks me how little there is in the way of professional support and respite for families in your situation. It would be better if your son could get used to going away some weekends allowing you to give the little one some one to one and also to prepare him for the likelihood of needing a residential school , college and beyond given the severity of his needs. A family member had a complete mental breakdown trying to cope with a disabled child with challenging behaviour. She was actually sectioned from the stress. The child ( teenager) was then given a residential school place 4 nights a week and absolutely thrived there.
social services don’t want to have to find specialist care for your boy 365 days a year. Tell them you need a break else you’ll break and you should get something offered.

Is there anything you can do in the here and now to make things easier. It sounds relentless and difficult. Do you have a garden space? Getting kids out everyday in the fresh air helps. If you can't take them out what about making outdoor space more fun with sensory toys, sand box and nice seating area. I did this for my son with autism and behaviour problems, as he is isolated and struggles with company. I know it still doesn't give you a break but I think everyone feels better when they are in nature.

You and your dh get 2 days mid week together, your dh works nightshift weekends to earn more money than he work midweek helping with finances to support you to work part time. You have some support from inlaws most weekends of the year, but they are older and deserve respite too and as you have acknowledged they are not their kids - and cannot be expected to be caregivers.

If your dh moved to mid week nightshift it just moves the problem to mid week when you are working and you might lose your free days together for not too much benefit.

I don't understand the posts where they ask your dh to only work 3 weekends in 4. Most jobs don't work like that, you are on a shift rota, can't pick and choose!

It sounds like your current setup is one of many least worst scenarios. Hope you manage to get some help/respite from social care.

It’s your daughter if he lost concerned about. It appears that was brought into the world to be a Vater got your son when you’re gone. What if she dies before you? Many people are “left at the mercy of social services” when they need care.

I don’t doubt that your life is hard. But yo say you get “no respite” when you have two days a week when you are not working and your children are at school is not true. That’s your weekend. Many parents work 5 days a week and spend their 2 days off with their children. They don’t get a day off.

If you really can’t cope, your husband has to change his shifts or his job. I understand that he enjoys his job, etc but sometimes life just isn’t fair and we just have to play with the hand of cards that life has dealt us. Many people, for many different reasons, have had to give up the job they enjoy and do something else to fit their family’s needs in. And who knows? Maybe he will enjoy the new job just as much. He won’t know until he tries it.

It’s not the fault or the responsibility of your parents that you are in this situation. Leave them out of this.

The ILs have said things like "well they're you're kids at the end of the day not ours" and "well DH is struggling mentally and he has got a good job there and good hours that work". I'm frustrated as DH listens to them as well and no one has been advocating for me. Lots of people failing to understand.

In laws sound worse and worse. How do they actually help you?

Time to give DH an ultimatum, this is unsustainable, you will burn out.