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?

Easy. Opposite shifts. He works 3 a week I work 2. We are in the same industry with the same shift times.

Thank you for the unhelpful and judgemental comment. If you're going to say "first off" at least say something else.

Or go back to your social worker and ask for help.

You have a long road ahead of you.

Your in laws have their own life to lead and they will only get older. Your son will only get bigger and stronger, then they are even less likely to be able to help.

You need to get the ball rolling with direct payments from social services. You can then recruit your own personal assistants to help and support at weekends. You can all then go out together, or the PA looks after your son while you take your daughter out.

Sorry to say, but I would take your husband out of the equation. He clearly doesn’t want to step up parenting and isn’t going to consider changing his shift pattern. Unfortunately, an awful lot of marriages break up in this situation.

Do you have childcare for school holidays?

How have you both been managing in the week for the days you both have them alone? With school hols looming it's not just the weekends each of you will have them alone. Don't want to be voice of doom but this is on the horizon.

Maybe it is challenging. But it's misdirected and not in the slightest productive. You are bregrudging people who do a lot for you a good time because you can't have the same and want them to do more. That's not very nice and it's really not beneficial to you or to them. I think you need to reframe these feelings, because you are really angry with the wrong people which will eat away at you, and potentially push away the only support network you have if you let it grow.

I’m not sure which 2 days you work in the week but can you shift your ‘weekends’ to the middle of the week? When my OH worked permanent weekends we would have our down time mid week. However, I wasn’t in the same situation as you and it’s sounds so so tough. 💐

I would speak to dh but I would also speak to the social worker regarding respite as sometimes they provide extra help with going out for that break. I’ve been asked about this but refuse even though I have no extra help(personal preference as my son has separation anxiety and I refuse to cause undue stress). You can’t put pressure on your in laws, their children have grown and deserve to now enjoy a life they have done the child rearing part. The fact that they help so much is a blessing as many grandparents offer no help

Oh hun you must be exhausted, rant away, it’s normal to have those feelings and well done for realising they are irrational . I’d be the same regarding weekends, especially with the nice weather. It sounds incredibly frustrating and isolating, try and press your social worker or even health visitor for services you could access, you sometimes need to push for them. Hope your dh understands yours and families needs and switches up work.

Is there some kind of state run care home you can send the SEN kid to on weekends?

No. My son has an EHCP, goes to special school and even they require a 1 to 1 for him there. Nowhere will take him locally, believe me we've tried to find somewhere. SEN charities do activities but they're not the ones where you can leave your child for a few hours.

They both go to school which gives us 6-7 hours of respite, but I do work 2 weekdays a week. 1 day off for cleaning the house, then 2 for some free time. Which is great, but the weekends are still a slog.

The lack of support for children and their families is criminal.

It sounds like DHs work pattern works out very well for him, he can effectively opt out of having to parent his children and give you a break. It sounds like it's reached the point that the only real choice is for him to change his shift pattern.

sounds really hard OP. Only realistic options I think are hiring help or your DH changing shifts. Have a proper sit down talk and explain how the current arrangement is unsustainable.

You need a frank conversation with DH. He needs to change shifts. If that isn’t possible he needs to look for another job.

Push the social worker to provide more support. Have you had formal assessments? A carer’s assessment for you and an assessment via the children with disabilities team for DS. There is a crisis in care, but they can provide more support support than you are currently receiving. Sadly, it is a bit like EHCPs, parents who enforce their rights get better support - it shouldn’t be that way but sadly it isn’t going to change any time soon.

In the meantime, Home Start may be able to provide help. Nowhere near the level of support you need, but better than nothing.

For nighttimes, do you have a safe space bed or similar?

Your husband liking his job is not more important that your mental and physical health, both of which could significantly suffer if this carries on.

Your DH needs to change his job so that he is in a position to give you some respite on the weekend. He is being incredibly unfair on you and your DD.

The other point is if your DC is requiring a lot of restraint or at the very least, physical management or other challenging behaviour management, asking other people not trained in the correct techniques isn't really ok. What if something happens "on their watch"?

Sounds like you need more professional help? I know it's not that easy but I would at least ask social services.

I know that's not likely to help but having watched my parents manage my sister (often badly, not saying you are not managing but people who don't look after the DC often might really struggle) I'd not like that responsiblity even if I was a close relative.

I'm adding another voice to those saying this is absolutely NOT on your in-laws. You haven't responded to that part except to call one random poster judgemental.

Obviously your in laws don’t have to help at all.

Can you get respite during the summer?

Tbh if he’s only working weekends it probably works out better in the long run although nights are hard on the body and can lead to depression.

He works nights and then obviously sleeps through the day which is an issue.

What time is he going to bed, waking up and then going to work?

He should be having time between waking up and going back to work where he’s at home looking after the kids.
E.g if he’s working 10pm to 10am then he’ll sleep for 8 hours until 6pm then he’s got 6-10pm to help out.
Or if he finishes say 6am then he can stay awake for a couple of hours whilst you have a lie in and then you swap and he goes to bed and you wake up.

Are you claiming caters allowance? If not why not? Use that to fund help over the weekend?

It’s irrational to be pissed at your in laws, sounds like they do a lot for you, they’re entitled to enjoy their summer, please don’t say anything to them about this as it could backfire massively.

Sounds like you get a decent amount of free time in the week so if it’s just the weekend you struggle with the only viable option is DH stops working weekends. There’s no other way and as PP say it’s only going to get worse as DS gets bigger and stronger, this could be the start of the grandparents withdrawing.

This. How quickly you can say he just ‘doesn’t like change’, but get upset that the IL’s have not helped in the last 4 weeks

The DH needs to step up.

Where are your family op? Are they available to help out from time to time?

I think you have to accept that you can’t expect more from your in-laws if they have busy lives and they are getting older and they already help you.

I do understand as I was in a similar position when my two dc were young and my dc’s difficulties were such that my family could not mix with them at all. I had to rely on paid help to do anything.

If he changed jobs to weekdays the surely you would still be in the same position just on different days? YABVVVU about your in laws and I can't see remotely how you would find their behaviour challenging.