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?

Summer holidays start in a few weeks, would that mean husband has to look after the kids 4 days a week to your 2 on the weekend? Plus you’ll have family time then too.

Sorry but I disagree and think that your in-laws need to help more. If they are fit and well enough to go away on holidays, they can cope with looking after your son or your daughter one on one. Or coming out with you as a family to give you another pair of hands. I would be asking them for more help and being honest with how hard it is! It really does sound tough, OP!
Yes there is the issue of your husband's work but I had to point out that IMO your in-laws should be helping more.

But your final comments were that the in-laws left you to it. No they didn’t your DH left you to it. And then you say that you would tell them (and DH) something has to give. Again it is your DH that you need to speak to here, not in-laws, sounds like they help a fair bit.

It sounds like they do help a fair bit, but they’re having a bit of a break. Maybe they find it a lot too. Their son is the one who needs to make changes here, not them. Maybe they feel like their helping is allowing him to shirk parenting.

Sounds like you are exhausted and need a break and some control back over your life.
Are there any local carer’s support groups? Check at your GP surgery. They often run days out, respite care, holiday, mini breaks etc. check the local offer on your LA’s website.
talk to the social worker about being signed up to whatever family resilience is now called.. they also can provide support.
And try and get the social worker to provide you with a carer in your home for maybe one morning or day at the weekend so that you can get some much needed time to recoup in order to carry on doing this the rest of the time.
the LA will try and prevent you reaching crisis point.

And yes, your OH should be changing his hours to help - but in this economic climate, I would imagine most be are grateful to just been employed.
good luck getting some help.

Yes you're right it does sound like they do help, but was unclear how much. I just disagree with so many people saying that in-laws don't owe OP any childcare - they are the children's grandparents! Also they may not realise how helpful they are and how valued their help is. Which is why I think it's worth making that clear and trying to arrange some more weekend time. Even taking the 3yo out so that she gets some time as the 'only child'.

It sounds very very hard OP.

As is often the case your husband suits himself as best he can and you are left to suck it up.

So often the case.

You have another child to care for and stay well for.

I think you need to tell SS how fragile your mental health is and that if respite isn't forthcoming you may have to take drastic action and drop your child off at A&E.

Dramatic I know, but so often requests for support by full-time carers are refused and they are just left to drown.

I'm sorry things are so hard.

The eldest child would have been 2 when she became pregnant with the second.. that would have required some serious crystal balling…

Do you get direct payments? I work for a family with a child who needs one to one care, I do the odd weekend and holiday days as his PA. The parents found me by advertising locally on Facebook. I get paid by direct payments and it tops up my main job (also in childcare). The best way to find someone may be to advertise yourself. I hope you can find someone x

Definitely advertising yourself is a good idea. It can take a long time to get the right PA(s) but once the team builds of over time it is life changing

DNAshelicase what an idiotic and unkind post, honestly shame on you.

SEN needs can be really hard to spot when children are very young, and even if you are aware you may be very naive as to the extent of them for many years. Is it also too hard to imagine that a parent of a child with SEN may still want to have another child?

It is society that is failing the OP and her DH (and therefore both her DC) in not helping provide enough support so that she can look after her disabled DC without mentally and physically falling apart.

I agree it sounds really hard and your DP should step up more but you mentioned you get 2 free days whilst both are at school and you are off. That's more than a lot of parents get. So adding to the other three days you work and clean the house that's still 5 days of 6-7 hrs child free.

@DNAshelicase

I have reported your posts. What an incredible nasty thing to say.

Don’t be ridiculous.

Going on holiday is absolutely not the same as looking as 2 children. One of who is very disabled and as op points getting stronger and stronger so harder and harder to look after.

How can you even compare the two?

Since the husband refuses to change anything to support Op, why should it be the the in-laws job to step up and do it? When they do already help out.

They said something you didn't agree with. There is a small chance that someone can change this thinking around and maybe already has. The op may have been able to give an answer. Alot of people ask this question and don't realise its not just black and white.

But let's just shut the poster down. Far easier.

My son as a 3 year old was a very different child to the one he is now. He's been for brain scan to work out why he has suddenly deteriorated, we now know it is permanent but we didn't know that when we had our second. So kindly F off.

Secondly, I still would have had a second even without his neurological changes. Why? Someone needs to look out for him when he's older. His cousins also have severe disabilities. I have no nephews or nieces on my side. My family also are minimal contact. When I die he will be at the mercy of social services with no one else to advocate for him. I don't expect my daughter to put her life on hold, but even if she's in another country having someone who is next of kin to keep an eye on him can make a huge difference from my experience in care settings.

Also, f off.

Don't know where you are in the country but where I am PAs and carers are thin on the ground. You do sound as if your level of need is high but that doesn't guarantee help without a fight. I would ask social worker if there's anything else available, inclusive youth clubs or day centres for example. Join a carers Association so you get to hear of help first before it all gets snapped up (Carers UK?)

You're getting a lot of heat re : your in laws. Your feelings are your feelings . of course its shit hearing about others holibobs when your stuck indoors. I doubt whether any of the holier than thou types here would be thrilled to be in your place.

Agreed your DH is rubbish though and he should step up.

So "ils you are going away too much I am telling you it has to stop you have to help with the grandchildren"

'Should'??

Which rulebook are you reading that twaddle from?

They already help plenty

This won’t solve the problem of the stress you face on the weekends, but since your DH has more days a week off, he should take over all housework and life admin to give you equal “relaxation” days and enable you to recuperate from the weekend.

The idea that you are spending one of your two free days a week cleaning despite having sole caring responsibilities for your severely SEN son every weekend is absurd. Your husband should be ashamed. He should be handling all cleaning, meal prep, admin, everything.

Also @PeppermintPatty10 maybe the in laws WORK?

inlaws already help you quite a bit. Can your dh change his job/working hours? I hope you get help through SE.

i mean report away or tell me to fuck off, I didn’t think my post was especially nasty?

Just my perspective that I’d consider life factors before I had a 2nd child. E.g if I had a challenging SEND child I’d consider whether I could manage another, or if I had limited money, or limited space in my house. I don’t think that’s that crazy/nasty?

op has given more info saying he regressed which I take on board. But she did also say that he is operating at times like a 1.5yo at 7, I didn’t think it was too much of an assumption that he would at least be developing 6m begins when he was age 2.