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?

Could you or your DH change hours completely so one of you no longer works or could reduce hours? If between you you are working 5 days at present could you work f/t during the week and DH become a full time SAHP? I realise that this may not be what he or you wants but it might be worth exploring alternative working patterns that result in the same income but not the subtle parent weekend you are currently experiencing.

Single not subtle!

I think yabu..3 disabled kids here- all home educated no nurseries or care workers, no ggrandparents looking after them- why do you expect in laws to have to care for your children what about your parents,why do you think grandparents need to care for grandchildren anyway its not mandatory?

the problem is your husbands job,it dosent fit the needs of your family

I want you to know that I know exactly how hard this is because my 6 year old sounds exactly like your little one. My child is severely disabled, in need of constant restraint, non verbal, GDD, adapted buggy etc. I also have a 4 year old with ASD and a 16month old NT (so far 🙏).

You can go out, you are not trapped in the house. I think it's a confidence thing and I have been there, last summer when I have a 5yo, 3yo and a newborn I spent most of the summer feeling trapped but it's because I lacked the confidence in myself.
It's literally a matter of finding safe places e.g. a park with one entrance/exit that is completely fenced and then taking short trips to begin with. It isn't easy, and a lot of the time feels like more effort to get out than it's worth, but the more you go out the more confidence you will build in your ability to cope and your 3yo will learn your boundaries and 'the rules'.

This summer is more of a challenging because I have 3 running in different directions, but I have my 'safe places' and we go there. We are all happier when we go out.

I am aware that I might sound patronising, I'm sorry, I really don't mean to be, but you can go out, you aren't stuck. I have no help and even when we do go out with family, they are absolutely useless and I really can't trust them to keep DC safe, so it's purely on me.

I also agree that it's not your in-laws responsibility to help you. You have to just deal with the cards you are dealt and get on with it. Sleep deprived and entirely exhausted, but hopefully not forever.

Out of the last 8 weeks, they've been away for 5

So they have helped 3 weekends out of 8? If so I think they are doing a fair amount. Maybe they are just not able to take the kids if you want to sleep, you admit yourself it is very hard going. Maybe they are trying to let you know that they need to stop helping so much because they are getting older and want to enjoy their life. They have not said they won't help at all.

I don't expect them to help every weekend but I'm now on my 4th consecutive weekend stuck in

This is a husband problem.. he can be just as depressed in work on a Tuesday as on a Saturday. Leaving you to suck it up is fucking dreadful but begrudging his parents their own life and the right to go away for the weekend at their age is not right either especially when they do help so well when they are around.

Your husband needs a kick in the arse..depression or no depression.

Posting in AIBU is always going to be challenging. I have an SN child so understand your struggle. I am not saying in anyway that this isn't hard. However as someone who has had a similar experience I would say that on a practical level you have 3 days each week to yourself and you are able to work for 2 days. Your family possibly don't see the need to step in at weekends. Sort out the weekends with your DH to improve the situation - also improve things for your DD so she can get out bit.

Poor @Crochetowl do people really think it’s ok to tell others they shouldn’t have had their children? WTF? Honestly a woman with a profoundly disabled child being treated like this is DISGUSTING. What a bunch of total arseholes.

Your husband doesn't want to change because he knows what the weekends are like. He prefers to dump it all on you, so he doesn't have to do it. He gets a couple of mid week evenings to deal with, while you get all day, every weekend. I couldn't love someone who would see me suffer while they makes choices to suit themselves.

I agree with this. It sounds like your ILs have been trying to tell you that you are putting too much on them, and taking a step back. And they are correct of course. I think if you let your anger take over they will step back even further. You say yourself how difficutl it is for you to cope with your children for a weekend (although you have respite during the week), but you expect two, presumably elder, people to want to spend all the weekends doing the same.

First of all she wasn't bought into this world to be a carer.

Secondly 2 days in the week is great but that doesn't help me when I have nearly 72 hours on my own consecutively every week in challenging circumstances.

I was that parent working 5 days with then 2 days off with kids. But my kids are not normal kids. And while no parenting is easy I can grantee having normal children is a walk in the park compared to having a SEN child who is aggressive, destructive and incontinent - forever. Think before you post please.

I just came on to say, you have my absolute sympathy. it sounds really, really fucking hard - and I would feel miserable hearing about their lovely weekends too in your situation, no matter how helpful and great they are of course you still have feelings! It sounds absolutely relentless and as a parent it is a thankless job with no medals for doing it all.

I'd echo others in that you need a sit down discussion with DH about everything, including how you feel about it being an emergency. You can't keep doing this alone, and if the in laws are guaranteed help then that's something you both need to work out between you.

Not the same, but my DH recently took a new job that means he's away a lot more. It pays better, so the trade off was I said we need to look into a regular babysitter with the extra money. If he wants to keep the shifts then he needs to find a way to support you. Maybe in the first instance thats him taking a weekend off so you can go to a friend's house and recoup, then maybe switching the shift pattern for a while - you work the weekends and he does the week. Then maybe you can chat about getting help in a more realistic way when he's seen what it's actually like.

also just asking for absolutely everything you can get in terms of support from SS, government, carers organisations etc xxx

I think it’s totally normal and unremarkable to expect your children to support each other as adults. I feel a bit sorry for people who don’t, they must live weirdly unconnected lives. I expect my parents, children, husband, siblings even my good friends to care for each other, more so if injured, disabled, bereaved or deserted. Why would this be any different? Is it because the child is disabled? I think some people need to challenge their thinking a little.

Sounds really tough for you but it is unreasonable to feel aggrieved with your inlaws. It is not their responsibility or job to provide child care to you.

Hopefully you can find a way of getting more support.

That sounds like a really tough situation, I used to work at a special school and completely understand how difficult it has become to secure short breaks and respite for children and young people with SEND. If it’s possible to get the social worker to attend your son’s next EHCP review meeting I would try and do that. If you can raise how difficult things are in the review meeting it might help to have more support from the different agencies and to look at if there’s any other help available - obviously I don’t know about your son’s specific needs but an example could be a referral to an occupational therapist (some special schools buy this in so there’s a shorter waiting list than through the NHS) to help your son with sensory regulation or referral for your daughter to a weekend playgroup for siblings of children with SEND so she gets some respite. If there’s any local parent/ carer support or advocacy groups they can also be really useful for advice and support.

I think from your posts your in-laws have two other grandchildren with disabilities, you don’t say if they provide any care for those other grandchildren but if they do could that be a factor in them not wanting/ feeling able to support your family more?

Um, no, not obviously.

No one has said that to them. I regularly ask them for help and they said it once when I was bawling my eyes out about how I couldn't cope.

'They're your children not ours' :-( That's horrible thing to say. Of course it's true and the fact that they help you is a kind choice they've made when they could choose otherwise, but equally to stand by and watch their son and DIL struggle alone would be morally bankrupt. I'd speak to them/get DH to speak to them about telling you about their holidays and just simply say - we are so glad you are having such a great time, but if you don't mind we'd rather not hear the details as we are really struggling at the moment and it's emotionally quite hard to hear about the nice time other people are having, even though we are really happy for you.' Very sad when you feel like the people who should love you are oblivious to your struggles :-(

You need to ask your council for a section 17 and carers assessment but you'll have to be pushy as they'll do beggar all if they think they can get pet away with it.

I would imagine that even if you aren't saying it, it is how they feel. That you are making them the only solution to your difficult coping. That's quite a lot of carry. Especially if they find it tough themselves. All your responses about them seem quite resentful, and like you really don't like them very much. Certainly you seem to have no gratitude for the substantial help they do give you, and no acnkoweldgement that it is also really tough for them to look after your kids. I wonder if that is obvious to them too.

With the other set of grandchildren - my BIL works mon-fri and my SIL works one shift a week, usually nights while her kids are at school. Their children's needs aren't as severe. They don't need as much support but in laws understandably spends a lot of time with the other set more than with me when DH is working, as they're close. My parents aren't in the picture but it does upset me a little as I genuinely need them more for support.

I'm going to leave the thread for a while and while I thank the messages of support and advice on where to look - I have been taking note of these and will look into all the suggested charities - I can't mentally take all the abuse I've got in turn.

Next time, please keep your imagination to yourself. How dare you suggest I am not grateful for the support I get or care about how they feel. Leave me alone.

God I get it, I have children (3yr and 2m), I have both of them on my own two weekdays and I really feel like someone is pulling the side block out of my mental jenga.

Every weekend, having no time to yourself no 20 minutes to decompress, no one to support, that’s incredibly hard. You must be a very strong person and sounds like you’re doing a great job!

Yes, he needs to find weekday shifts because this isn’t working at all. In my opinion he is being a selfish git and giving you the hard work.

err, from what you have said. You are complaining that they have "only" provided 3 weekends childcare in the last 8 and talked about how smug and mean they are in their comments to you.

I will "leave you alone", because a it sounds you are in a really tough place. But please don't make out like I am somehow harrassing you, you invited for opinions on your inlaws, and I have been sympathetic throughout. When you are in the thick of it it can be difficult to see how things look from another view point and beyond what you need to cope. I hope that things will improve for you, one way or another.

You are misrepresenting what OP has said, which is really unhelpful. She clearly is grateful to in-laws. You can’t seem to see the nuance in their behaviour.

You said I was resentful and decided despite not knowing them that I was making them feel miserable and I was ungrateful. That's a lot for you to imagine.

When I say they've helped in 3 of the last 8 I mean they've taken my son for 2 hours once that weekend. Not that I've had a spa weekend to myself or with loads of help for hours.

I am entitled to my feelings which I certainly keep to myself. Seeing others having multiple holidays while you struggle to get through the next hour isn't easy.

I sympathise, it must be really tough.

But you have three days per week of no work and no children. Isn't that enough time to do something nice together?

Can you work another day so that he works one less day?

I get it's hard, but something's got to give and you seem to have more time to yourself than the average parent (albeit harder work when you have your eldest of course).