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?

In your situation I’d be very very tempted to move house to an area with better support options/ short breaks or respite. They exist and long term it’s what will save your sanity. As a senco I’ve seen it a few times, one family moved from London to Glasgow for example.
DH can chose the move or helping more.
In my east London borough for example you’d get access to some overnight respite, short breaks allocation that can be used in various ways (PA, away at locations…), there’s charities with after school stuff and a centre for after school to access.
Also your dd could access some groups.
I honestly think it should be your priority, no one can long term manage in your circumstances.
I wish you all the best

OP you are amazing.
Ring social services prepare list of issues. Don’t let them fob you off. You need a Carers AND a child’s assessment ASAP.
There are timescales they have to do this, keep a note and keep pressuring them
Talk to school, when you get a budget etc, staff are often willing to work as children’s PAs out of hours. Push to get his social and health needs written on his EHCP it helps later on.
It took me time to get SS to carry assessments but definitely worth the pain.

Does your DLA reflect your sons increased needs? It sounds like he would qualify for higher rate mobility on his behaviour which means blue badge and mobility car? Get advise ie contact a family, Carers resource.

To be able to work with a severely disabled child takes a massive effort , there’s very little support out there and as this post shows a lot of mums who haven’t got a clue about our struggles.

To be honest, I struggled on mostly on my own with my eldest DS plus three other kids for years. Respite was mythical, we were approved for it and offered a budget but no one including specialist provision would take said son due to his extremely challenging and complex behaviours. I had a care budget that I could not spend on care …..marvellous. At sixteen I finally won the fight for 24/7 education for three terms per year. The LEA and SS had not wanted to cover it as it cost them way over £85k per annum for the education alone. had fought for ten years to get it and that was with support from IPSEA.

It’s hard, bloody hard when you have a young toddler stuck in a growing child’s body. Most useful thing was when I had access paid for by the NHS to low arousal intervention training….SS wanted secure accommodation that was not suited to his actual needs…..the training did not solve but helped manage some of his behaviours.

Take any funding for support then try to locate it. Again it’s hard most pas only stayed for a few days then left as son was well..challenging. It’s worth trying if you get funding so your other child gets some of your time. TBH I used the time to sleep.
Contact NAS as they may be able to signpost you to local support you might qualify to access.Thanks to them my DS had one week per summer at a very specialist plays scheme. Your DS school may be able to signpost.
Look for online support , it’s not all sane but there are some specialist sub groups who will get what it’s like dealing with SLDs and ASDs and related. It might be a way to get some peer support from other parents who get what your facing.

Check your getting what your entitled to using the disability rights handbook. Costs about £27 for this years but well worth having or borrowing from local library.

My DH worked crazy hours and almost every weekend just so we all had a home and food. Food is good. I could not work as no childcare would touch said DS. he was shattered from working long unsocial hours and watching at night between 12 and 4am so I got some sleep and I was just so shattered from none stop caring to try and keep everyone safe. Tried part time but that could not cope with all the hospital appointments and stays. In the end working was costing me far more than I could earn. We spent many years feeling like we were two unpaid carers who left each other post it notes on the kettle. It’s bleak, soul destroying and the highlight of our social calendar was the once every six months coffee by ourselves in hospital whilst the play therapist tried to occupy him for half and hour. It is easy to say partner should step up but the reality of dealing with a child with complex needs is grinding hour after hour then day after day. Ther are no nice easy quick solutions.

It’s only now he has supported accommodation as a 30 year old adult we can do things together as a couple again. Sadly most couples cannot cope with the stress and strain of a child with complex needs against total lack of resources and practical help. From experience moving rarely helps unless you can move near to family who are able to physically help. It is a pain getting adaptive equipment paid for and installed all over again.

Second Pumpkinpies advise about calling SS and refusing to be fobbed off. KEEP records of every interaction with them. Insist they do a carers assessment of needs on you. Contact Carers UK they will be able to advise further. You can access their telephone helpline as a parent caring for a child. https://www.carersuk.org/