Any parents of disabled young adults?

[YogaLite]

How do/did u cope with Christmas?

I held it together just about until now but the constant grief, sadness and regret seeing him struggle with presents for a much younger age is killing me. He is in bed now and my tears are flowing freely.
Apparently it's good to cry to get some chemicals out of the system but Christmas is a complete agony.

I could give him so much more but he will never use or understand any of it due to his progressive physical and neurological condition.

I hate Christmas, anyone in similar position, how do u cope? Surely I can't be the only one??

Thanks @Itisbetter, the UC process has been ok so far but it sounds like it will be a while before the health assessment is done.

We had carers at home before DS moved. They came from another local agency who mainly provide supported living placements but also do some outreach. They did 3-6 after college and 9-5 in the college holidays, we had 5 people in total covering different days and they would cross cover. I didn't organise their rota, just let the manager know what we needed. They were all lovely but often found DS needs challenging as their supported living was a lower level of need. Also having people in your home all the time is difficult, however lovely they are. This was funded via direct payments along with 42 nights per year of overnight respite. I also directly employed a PA to do some weekend hours (she had been with us since DS was at school). This whole package was set up when DS was 18, it worked for 5 years but I never saw it as a long term plan as we still provided most of the care and the admin around organising everything and the direct payments was huge.

and the admin around organising everything and the direct payments was huge.
The admin around everything is colossal and I find listening to peoples perfectly understandable stress surrounding caring for ds very very difficult. That feeling that your home is someone else’s work place isn’t great. I was told assessment appointments are months rather than weeks away and I don’t imagine anyone will suggest ds is able to work so fingers crossed all will be sorted soon.

Taking note of all advice, thank you all, yes, even without UC as yet, there is tons of admin on top of all the medical stuff. Good to know that there can be a manager to at least handle the carers' cover. We also found that many carers are women who work with more able cases and with wheelchair now, we would almost certainly need a male carer.

I have another question.

Has anyone been able to arrange for any temporary carer for holidays, I mean when travelling with DC rather than leaving him behind in respite?

Are there any nationwide agencies who can provide this sort of care from a different location?

SS have asked us if we know anyone personally or a family member who could do that - which we don't.

When away with DC we would only need a carer for a few hours a day but if we got someone from a local agency we would have to pay 24/7 + food & accommodation for them and SS would not fund that.

Is there any other way to do it if i don't want to leave him behind in respite? Advertise somewhere locally to a destination but where?

For holiday funding this case is worth reading.

My dd10 is autistic and this Christmas the wheels have completely come off. The meltdowns have been off the scale and she has refused to get dressed or go anywhere. She just wants to sit in her bedroom with the blind shut and her iPad. It's agony seeing other children her age enjoying themselves. All her friends have deserted her and no one has messaged her to ask her what she got for Christmas. She refuses to brush her hair and teeth. Kicks and swears at me. I need to her help in the new year. So so hard. The tears have flowed a lot this season.

@lollipoprainbow I do understand how u feel, there is just no emotional support, even family are not interested to keep in touch here.

Family don't get it no! My sil made her displeasure known last night when my dd sat at the Sofa and ate her food rather then at the table with us. Family gatherings are so awkward. Luckily it's only once a year.

@JustKeepBuilding thank u, this will again come up for discussion next year with SS

100%. Thinking of you, you're a true warrior, as is he.

I work with adults with learning disabilities (not because I'm some kind of saint - but because I bloody love it) as an AHP. I think I've seen so many permutations of support arrangements I've lost track - yes there are people who have care staff supporting families who look after their family member in-home, and then there are some really small care homes with 1-2 residents, and some larger ones with 5-7 or so in our local area. I'll be honest - there are a couple that we've had strong words about supporting their residents and making sure that they get all the interaction and activities that they're entitled to just as fellow members of the human race - but there are some out there whose residents have such busy social lives it's a bugger getting booked into visit them!

I get it with my own kids - one is autistic and the other has raging ADHD awaiting assessment - my parents accept that they do Christmas in their own way and the family members who can't accept this get rapidly told to bog off and do one by me! (cough... my brother... cough)

And yes, the admin in the system is bullshit and things take longer than they should do (we're pretty good with our waiting lists at least for our element of things but we have huge gaps in other services where there's just no one we can recruit), and it shouldn't be dependent upon who you get working your case and if they're a good egg (or a stubborn bugger like me) as to how hard they're happy to push things.

End of the day - we all give everyone in our families the Christmas THEY need - fuck what everyone else dictates.

Thank you @CoffeeWithCheese for adding your experience, I will be starting to look at various options next year. With admin, med stuff and support options it's all pretty much full time.