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 sympathise. I also have a child with SLD and challenging behaviour. That being said, I could only wish for inlaws for an hours peace here or there. My child's other parent isn't in the picture, I am a lone parent. DC and I have never even met their side of the family and I have absolutely nobody to take my child. They have sleeping issues so I am lucky if I even get an hour to myself at night as sometimes they won't sleep until gone midnight. As I say I sympathise, it can be frustrating. But sadly, sometimes it's just the way it is, especially with a child with additional needs.

Seems like a no brainer, your DH has to change for weekdays shifts, you each get 2 days off during the week and you then tackle the weekend childcare together.
And stop taking your ILs for granted, they don’t owe any childcare, and realistically with them
getting older / your DS getting bigger and stronger, they’ll be able to help less and less, so see any help from them as a bonus.

Hi,
Haven't used this myself (but do have an autistic child). Think there are differently organisations and depends on where you live who they are. Perhaps your social worker could help you apply.

https://educationhub.blog.gov.uk/2023/04/11/what-are-short-breaks-for-disabled-children-and-improving-service/

Sorry you are struggling with support and I do get that having a break is definitely needed. 💐

This must be incredibly difficult for you @Crochetowl and I’m sorry you’re struggling.

It does seem that the only solution is for your DH to change his shift pattern. You can then at least go out as a family at weekends, which just can’t happen atm.

But sadly, sometimes it's just the way it is, especially with a child with additional needs.

I'm really sorry for the situation you have found yourself in, but it doesn't have to be this way for the OP. The children have 2 parents, and right now it seems like only one of them is actually doing any parenting.

I don't know how this works but would weekend respite care be an option? No idea what's out there, never having been in this situation, neutral question.

Completely agree, parents need to work as a team, op isn’t asking for free time , she’s asking for quality family time outside the house on a weekend with her two dc, which is impossible alone.

IMO your husband is being incredibly selfish and has a nerve refusing to change his hours.

As you have stated, unsurprisingly, you are both suffering from strains to your mental health. He has his solution sorted - avoid the weekends! Get four days to himself when they are at school. Perfect. For him!!

Unbelievable - is he not embarrassed that you are left with the weekends?!

If you are in the same industry I would swap shifts with him! Selfish man.

Keep fighting his selfishness. Things have to be fairer for you both.

As another PP said, you are on a long road here and things are unlikely to get easier.

You and your DH are both really suffering. I can understand why he is avoiding his responsibility at the weekend, and that is what he is doing: effectively abandoning all the care to you.

I think you really need to think about what you are going to do long term and start putting new plans in place and consider starting the battle for residential care... and it is always a battle and you need the strength for it. In the short term maybe your husband needs to change his hours to support you and perhaps he could go back to his current hours when you are in a more stable place.

I was told by one professional that 75% of marriages fail under the kind of pressures you are facing. That would be a terrible shame for all of and not least your younger child. I know my own health and relationship has been severely impacted by the challenges we are facing... and our challenges seem slight compared to yours.

Just an idea, might not be an option at all, but if he’s in a special school, could you approach the school or the TAs and ask if anyone would be interested in helping you at weekends?

Keep in mind that if your Dh did switch jobs or shifts and began to work weekdays, who would mind ds on the days he’s sick when you’re working?

There is very little respite available ime,and its assess on need and even if a child is awarded respite it can take months ,to actually get it and it's limited .

Are you the parent of a severely disabled child who.nerds 1:1 care at all.times ?
Its all very well.saying you know your mum.would have stepped up.butb until ts actually your reality you have noticed hoe hard it is to card for a child with complex disabilities

I think people are focusing on the in law thing because your diversion of your frustration to them is preventing you from targeting it where it should go, to your DH. And until you accept where the problem really lies things won't improve in a sustainable way.
Its obvious that what needs to change here is his weekend work. Every other option is just papering over the cracks and relying on other people to pick up the slack his choice is creating.

2 days in the week is the same number of days as a weekend. If this is about getting “a break” then YABU. If it’s about being able to go out at weekends together as a family then YANBU. Something will have to change at some point anyway, or your younger child will never be able to do anything at weekends. E.g. birthday parties, swimming lessons, playground.

What a shame. OP has it tough.

I thought this too. 2 free days could be used to recouperate.

Absolutely as a PP said what you need to do is push the social worker to get direct payments and employ PAs
It takes a lot of pushing indeed & recruitment is hard but once you have some PAs in place life is completely different
(Speaking from experience- similar situation to yours but eventually husband left - and I didn’t realise that PAs were the answer until recently- which I had known before)
I know it’s really really hard

I thought op said she has funding just nobody to take the kid

All the money in the world can't create places/staff

He gets 4 days a week of a break whilst the children are at school and then does nothing to help with them at weekends, on what planet is that equal to OP having 2 days during the week (probably filled with housework etc) and then doing everything on weekends? Him working during the week would mean he could take one or the other out.

I think some imagine you can book personal assistants and respite places easily.

In our county there is 1 respite bed available for respite but 200 children who are severely or profoundly disabled.
Personal assistants are a nightmare to find.

Our son needs 2-1 care and it's taken over a year to find Personal assistants that hopefully are starting soon.

Also funding from social work departments for this type of care may be rationed which for situations like the op is unfair and unethical given the needs the family have, there should be much more help available as children who need 1-1 or more help you will find the parents struggling to cope no matter how much or little they work the strain in the household with a disabled child is alot.

I really feel for you, it must be incredibly difficult and the lack of natural support will make things harder.

I'm not sure where you live but every LA has a Local Offer for young people with additional needs that you should be able to access although as you have a social worker in place this would be your best route of support. In terms of PA support definitely push your Social Worker - they won't be able to help find a PA but the first place I would look is your son's school - approach the TAs to see if they can support with direct work at the weekend.

The is a chronic lack of out of school provision for young people with additional needs however as your Social worker to put a separate package of support in place for the school holidays so you have one allocation for term time and one for the school holidays.

Is his job with the NHS? Is he getting the weekend enhancements/night enchantments etc?

Dh needs to change job.
Is respite in the week available.
You need to work out what you do actually need to be able to go out on your own with dc at the weekend, then apply for such things be it electric wheelchair or whatever. Speak to sw'er. Or pip payments should be used for this very thing.

Depending on DS’s exact needs have you looked whether Continuing Care may also be a possibility.

2 days a week all to yourself is quite a lot, can you use those days better to recover or gear up for the weekend? Make sure you're making the most of all that 'you' time to get what you need.

My thoughts. I have 2 children with SN and work all week and care when they are not in school. No break ever. One is a teen who will need lifelong 24/7 care and we get no respite. I appreciate it is not a race to the bottom but you have a lot more 'free time' than many other parents of children with SN. Many have nothing and either work or care. Unfortunately, support for families like our is criminal and unlikely to get better anytime soon. There is just no help. I would speak to DH and try to rebalance the work schedule so you have an equal amount of free time but I would try to change my mindset and look at what you are having: 3 x school hours of no work/childcare and try to make the most of those.