constant fighting, child with complex SN, no support, work stress. How to work this out

[fightingSmiths]

NC... wasn't sure where to post.

We have 2 DC. Oldest is a teen with severe low functioning autism. and then there is a younger child (under assessment, possibly HFA), DH and I.

I don't know. we are just crumbing under all the stress. He works full time and long hours. I only work school hours (and use a SN holiday club in non covid times, currently I WFH).

The issue is, DH works long hours and has longish commute. He is early 50s so not the you youngest. I am in my mid 40s, I work during school hours only (but only 20 days AL, so not a term time only job) and I take DC to the minibus -taxi collection point and pick him up again. In between I work a as soon as he is home I am on caring mode. There is no time for myself but as DH works and had a long commute, he cannot help much during the week. I am just so run down. I have severe endometriosis and have horrendous pain. Had surgery planned for May 2020 but got cancelled and not told it may be another 2 years due to waiting list pile up. I can barely cope some days plus the stress from work and the caring. I am just constantly catching my own tail. I am ill and tired and I just have nothing left to give. DC1 needs constant supervision, doesn't sleep (yes, we tried melatonin). DC2 is massively affected by the whole situation (teen brother with severe ASD, a mum who loses the plot and is in pain most of the time) and a dad who is out working long hours each day).

DH and I are under so much stress. We are just at each others throats all the time each of us blaming the other for things that are undone/piling up. We have no family around and no support network and no, we cannot afford a cleaner.

We cannot be the only family who operating under such circumstances and I am sure some make it work. Can I ask how? I am pretty desperate to stop the fighting, bickering and crucially, to get everything under control. I am just drowning (DH too).

That’s horrendous.

Do you have a care package as a part of their EHCPs?

tank, no nothing but I don't think the 2h /week families get round here after battling for years will make much of a difference. but in any case have no time and energy to fight for this anyways.

Oh op, similar situation, the 2hrs is peanuts. I barely notice it. I spend the time gearing myself up for when he gets home. I don't have your health concerns. But I work full time. I have no answers I'm sorry

wizz, in a way I would like to go back full time as part time is crap financially. how do you manage wrap around for a child with such complex needs? I tried but could never find anyone willing to take DS. I sometimes think it may be easier if I work longer and he is in after school care. but I am not sure if I am kidding myself.

I’d ask for an early review of older one’s ehcp with a section 17 social care assessment.

Do you access Short Breaks via your Local Offer?

I’d also consider a Waking Day Curriculum. And what’s with the taking him to the taxi point? Travel should be school to home, not school to an arbitrary convenient point!

@Tankflybosswalkjam

I’d ask for an early review of older one’s ehcp with a section 17 social care assessment.

Do you access Short Breaks via your Local Offer?

no, never had a social care assessment of short breaks. Not for lack of trying. I just have no energy and time left to have this fight with social services. We are always fobbed off.

@Tankflybosswalkjam

I’d also consider a Waking Day Curriculum. And what’s with the taking him to the taxi point? Travel should be school to home, not school to an arbitrary convenient point!

What is a waking day curriculum?

Our LA does not fund home school taxis. It's a minibus with a collection/drop off point but that is almost a mile from home. He cannot go to the bus alone. and yes, we appealed this but lost. It's minibus or nothing.

Ooooo there’s so much to go at there! Firstly I’m assuming you’re in England. So in the first instance get a slot with IPSEA or SOSSEN and say what you’ve said here. You really need a social care assessment and it’s your right as your child automatically has Child In Need status as a consequence of his disability.

Re waking day, it’s where the entire day is included as a part of the child’s curriculum. There’s a better explanation on the council for disabled children website.

Re transport, SENTAS are the best place for this. Your local authority must not employ blanket policies. If your child is entitled to transport then it has to be appropriate for him, including collection points.

What I will say though, and you’ll know this anyway, is that the ONLY way to get anything done is to be a polite persistent pain in the arse. Things should up a notch once you get social care on board. But you’ll have to continue to push.

Transport:

sentas.co.uk/parental-preference-of-school-in-a-statement-or-ehcp-and-home-to-school-transport/