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?

I don't have anything useful for the OP but can people lay off sniping at her about her in laws and show a bit of compassion? No one would want to be in her position, stop judging her when she is clearly at breaking point.

This is a really horrible and judgy post.

Unless you have a child with SEN you have absolutely no idea.

She HAS a second child - how is your post in anyway helpful. You’re just sticking the boot in for no reason.

What are your husbands hours.. does he help before and after while not sleeping?

If he works 12 hour shifts, can you schedule some time where he is solely responsible for the children while you sleep or go somewhere else, even if this is only for 2 hours?

If you both do shift work at the same place.. can you swap with him? (I know it's unlikely to be that simple.. )

I cant believe you have been getting a hard time here OP. Honestly i can't imagine half these posters speaking to a good friend like this if this was her circumstances.
OP, your husband really does need to step up. I agree with others that it sounds like he's escaping the home at the weekend. You getting 2 days and him getting 4 is beyond ridiculous. You should both get 3 at very least to make it even.
Can you speak with any organisation etc near you that you could reach out to for support? The reason I ask is my son had a rare chromosome disorder and I now volunteer for an organisation for families with similar diagnoses , and definitely something which has been done at times is someone might go round to help a parent who really needs a break, even if its just to mind the child or help with a bit of housework.
I get this isn't the answer longterm but could provide help for right now as you sound absolutely burnt out.

For those posters saying that the in laws owe them nothing, of course they are right. The child is the responsibility of the OP and her husband and them alone.

But the compassionate thing to do would be to help with their grandchild a little more, give his mum a bit of a break? I must say they also sound a little insensitive raving about their weekends away whilst the mother of their grandchild is going through hell…

It is not something for the in laws - they have no duty to do any childcare. I am a grandparent and I don't even do a night a year (I work full time and still have children at home) and nor did my parents.
However it is clearly at difficult situation. Are there any residential facilities, such as boarding schools for children with special needs which might be able to help?

This thread is awful and I am not surprised the OP has got annoyed.

She knows she is not being entirely fair to her PIL. She has said it is a feeling. Has anyone actually ever only had rational feelings? To be honest OP I think they are being tactless at best, it would annoy me too.

And she can’t make her husband change jobs. She can ask, plead, give ultimatums but if he won’t he won’t. And maybe her energy is a bit ground down.

These threads always attract people with no idea at all about disabled children telling them to drop them off at SS offices or something. No one gives a shit.

And as for the person who asked why she had another child, I think the OPs response was bang on.

Why should they help out more when their own son can't be bothered to look after his own children? The reason weekends are hell for the OP is because her husband doesn't want to change his job.

If he's off 4 days in the week, then at least during summer hoildays he will be home.
After summer I'd come down on him and tell him he needs at least one weekend day at home to help.
Having disabled kids are hard, YANBU.

In laws keep telling me about the great weekend they've had again

In laws should not be doing this. I would change the subject straight away when they start. Of course they should enjoy their weekends but they should learn to read the room.

Do they tell you about their weekends when DH is there?

I really feel for you OP. I was in a similar position. No family help at all though and no friends to help. Very isolated.
Dh worked full time we got a cleaner and that didn’t help as dc HATED someone different in their safe place so had to stop it.

In the end I was so burnt out dh gave up work totally and we both claim carers allowance and get UC. It’s saved my life

He says he feels guilty but financially we need the money. I've found him employment that pays more but it doesn't have as many benefits - still isn't keen.

Not guilty enough to change jobs.

He sees caring for dc as primarily your job.

What are these benefits he has in current job? Because I think primarily so he can offload care for your dc on to you guilt free.

Are they going on and being smug. Or is that just the perception because OP feels they ought to be looking after her child instead? It's fairly normal in general chit chat to talk about what you have been doing "how are you?" "Yes good thanks, we've just come back from Rye, it was lovely. How are you all getting on?". I am not sure that's inappropriate. It's not like they have pulled a sicky from work!

Can’t he book some paid annual leave.

Compassion just flows outta some people, hey?! 🙄 OP, I understand it must feel like a punch to the stomach hearing your ILs talk about their holidays while you are struggling so very much. It’s a tad insensitive. I know they are helping you but still, they could consider what they say and to whom.

How far along with the Direct Payments process are you? If you know how many hours you’re likely to get, you could start looking. Resources are very limited but you’re clearly in desperate need of some for your mental health. I think it’s important to articulate this to your social worker. You come across as eloquent so perhaps you can put it in an email. Sometimes you need to explicitly tell them the impact this is having on you and your family for them to really hear it.

Your husband needs to step up. You’re taking on the bulk of the childcare and making sacrifices. I understand why you feel resentful of the situation and indeed of your in-laws. If their son stepped up, you wouldn’t be feeling this way!

Your feelings are valid. Emotions aren’t always logical and you’re in a highly stressful, exhausting situation. You deserve kindness
and compassion, not criticism and nit picking. You are a loving, good mother and a human being who deserves support. Please don’t forget that. It’s so easy to lose yourself but you matter too.

OP just to add some reassurance, I got annoyed at my in laws going away two weeks after I’d given birth to DC2. I was readmitted to hospital and it was chaos. Was it rational? No. Was it their fault I was readmitted and childcare for DC1 and 2 was chaos? No. Did I feel that way because I was very stressed and exhausted? Yes. And this was just a one off situ, it wasn’t an ongoing one like you have. You have my complete sympathy.

I do echo others who say that your DH needs to step up. Nobody really likes changes whether or not they have depression or additional mental health issues. The fact is that this is his child and he doesn’t get to dip in and out when he suits him or when he can ‘cope’. I know it’s hard but you need to find it in you to lay down the law with him. Tell him you cannot cope and you will not go on like this.

Have you any idea how much residential schools cost?
The child is six most kids don't go.to.residential, schools. Untill.much older ,and its really not a simple process 🙄

Just coming on to say exactly this! My god 7 pages of it😐

The OP did not sound entitled to me, she laid out the facts with her feelings, nowt wrong about doing that, she sounds like she’s on her knees with no respite in view.

I’m so sorry OP your life sounds extremely tiring and not a lot of joy involved currently.

I do hope you work out a solution.

One is retired, one is working still but unable to manage DS on her own.

I think that you have to plan for the short and the long term - you will need more and more support from Social Services as your child with learning disabilities ages and the sooner you start making them aware of that fact the better. My son is 19 now but very similar to your ds and you will only get the support you fight for from the Social Work Child Disabilities Team, there is no clear strategy to provide help for everyone who needs it. Make getting the PA in place a priority and then keep pushing relentlessly for more funding to get more hours. Is there any residential respite available in your area ? As that could be worth looking into. I found that you have to just keep building on what you have, you will not be offered what you need in the first instance.

OP your life sounds very tough and I, like you, think your DH should be working during the week. It’s totally unfair to leave you solely responsible at the weekend and therefore impacting on both of your DC’s ability to get out and about. He surely must be able to appreciate how difficult it is for you. If he can’t maybe he needs to try it to be able to understand.
if you're both working in the same field how would he cope if you did weekend shifts?
Sit down and calmly talk it over again. It needs to be shared before you burn out. Feel for you

I agree your husband needs to step up. It's completely unfair that you've given up your career, and have 2 days off a week, and have to look after the kids for the entire weekend alone whilst it sounds like he has the same job, sees his kids in he evenings only, and has 4 days off to himself. 'Not liking change' is not a valid reason for letting your partner shoulder much more of their share of the load. He will have to get used to change pretty quickly if you end up having a breakdown

This has nothing to do with your in-laws and everything to do with your DH. He needs to change jobs as the current arrangements aren't working.

I'm astounded at some of the horrible posts on this thread.

OP, I've been there and I hear you. The brutal truth is that parenting a child with complex needs is really shit and there is never enough help. My 21yr son is in supported living now, he's happy and we have our lives back. But we almost went under - and we had respite.

You and your husband will have to work out whatever is needed for you both to survive. That might involve him changing his hours but I'm not going to presume anything - the normal rules of shared parenting don't really apply in situations like this. But you do need to make him listen to how you are feeling.

And don't feel bad about offloading about your in-laws.

I hope things improve for you soon

Is there any respite care, available to you in your area, in some areas they also provide overnight care!