Covid vaccine, healthcare for those who won't/can't engage, tension within family

Oh, I wish I did.  Our social lives have been very limited for some years now, predating Covid by a long way.  The thing is, even when I think of the friends I did have, we seem to have diverged so much after everything that's happened.  I think I was living a pretend life until nearly 10 years ago, when severe mental health issues started to impinge and especially the past 2 - 3 years since I realised that we're autistic.  And they impinged to such a degree that the gap felt unbridgeable.  And we had to move away from our hometown because most of the family no longer felt they could live there (the whole town became a place of trauma).

I still have a few friends now but only on Facebook.  Although none of them are medics, a fair few are counsellors from the various courses I did.  This probably sounds more promising than it is because at that time none of the training covered neurodiversity and none of them (in spite of lots of group development work and skills practice) ever noticed that I might be autistic.  That said, more contact would be good and maybe would gradually normalise a bit more interaction.  Well, if only our son didn't reverse sleep and hide in his room for most of the day.  :( Actually, thinking about it, it'd be something if he stayed in the same room as us for longer than a few seconds...

Do you know any medical workers of any sort socially? If you had a friend of the family who was a nurse, midwife, or suchlike, then getting to know them might help your son with his anxiety through familiarity.

You are brilliant at writing I wish I could write as well as you. Hopefully I will get better in time.

I do follow quite a few people and organisations on Youtube and Facebook.  I can find stuff on burnout that deals with it from the first person perspective, but nothing on severe, chronic burnout (akin to what Amitta Shah describes as catatonia in many ways) from the 3rd person perspective - i.e. that of the helper, carer or parent.  

Kieran Rose's work is about the best, plus, for younger children (if anyone has an interest in this area), Jodie Smitten or The Nurture Programme.  But the general advice seems to be to provide a stable, nurturing environment.  Low arousal, low-no demand, with an open-ended willingness to talk things through without ever imposing anything (espcially if, as we believe, there's a pathological demand avoidance profile).  I simply can't find any more, although there must be other familes that have come through this.

Maybe go online YouTube there’s great stuff on how to help children with autism. You could then learn more on how to deal with different behaviour and what is likely to be causing it. Hope that helps.

Your family reminds me of mine, with me as your problem son, except my parents were worse than me and we had no mental health support.

Yes, I think there's something about the fizz and the caffeine that feels uplifting and clearing to him.  But given his lack of dental hygiene, this is another major area of concern.  

We went through the same thing with Monster while he was on psychiatric drugs (which didn't work, incidentally) and, at the time, he was still engaging a little and had a couple of ECGs.  The effects of Monster really showed up on the first ECG and then he moved mostly to Cola.  Then my older son moved back in with his own Monster addiction and this opened up our younger son's taste for it too.  I now limit it to 1 can per day but even that worries me.  It's all a mess!    

I may well do but at the time I contacted the CCG and PALs and didn't get anywhere.  The CCG just stopped returning my calls in the end. 

When I went for my own autism assessment, my son's case was also reviewed because of the things I said (although another team in the same organisation had discharged us, they decided that there were possibly some risks) but I wasn't happy with the approach.  On the instructions of my mental health worker, a couple of social workers just turned up at the door to see our son while I was out and he got really angry and turned them away.  It also broke trust with us for a while.  Then the mental health worker got cross with me for not letting them in and I got into a heated exchange with her because I'd talked to another worker about the risks of breaking trust within the family and the need to handle the situation sensitively for a good outcome and this other worker had agreed to cancel any social worker visit pending further discussion.  Unfortunately this second worker (who seemed nice) had then gone on long term sick before cancelling it so it all led to a bit of a mess.  

Now I feel rather afraid of opening that door again because I really don't want any mental health or social workers insisting on another MH assessment and scaring our son into even greater retreat.  All very difficult unfortunately, in that i'm seeking support for us to support our son, rather than support for him directly (because that just made things worse).   

i used to be addicted to cola too, the fizz did it, and possibly the sugar and energy and the refreshing coolness which also i guess had a effect that made you need more of it for that constant refreshing feel.

but in the end i quit it because i feel it was killing me. it gave me very bad acid reflux and i feel it did something to my heart too as my heart started feeling fluttery and weird with it, i felt it would surely kill me if i continued to drink more of it so i quit. it was diet cola though, maybe all that aspartame did it, maybe regular cola would have been better.

Hope so too.  Alas, I've hoped this every year for the past 9 years. 

Hope that 2022 will be better.

Contact the quality care commission. Tell them of this they are the governing body of all care.

Basically this all spins out from our major problems with severe burnout and breakdown, for which I've so far been unable to enlist any help - online, the NAS, local autism charities, local NHS services.  Lives, and his life in particular, have now been "on hold" for nearly 10 years.  It feels beyond belief but we never give up.    

He's truly a hermit, barely venturing out of his room but with one significant exception - he has a bit of a cola obsession (I think he thinks it clears brain fog and gives him energy) and, he believes, it has to be bought in "fresh" each day, rain or shine.  So he goes to the local store every day and yes, he even went out in Storm Arwen to buy some - it's like a protective ritual, I think, and not negotiable.  So unfortunately any germs in the local store will be coming our way.  And we have lots of medical issues - cardiovascular incl. high blood pressure and angina, asthma, liver and kidney disease. 

NB   He also refuses help if we offer to buy in the cola in our weekly online shop.  :( 

Unfortunately, trust was destroyed bit by bit, week by week, by a whole troop of crisis team workers then CPNs, psychiatrists and psychotherapists over a period of years.  Now engagement is well nigh impossible and we have no support from services because they only deal with individuals, not families, he's an adult and he's decided he never wants to see any of them again.  I can't get him to see our GP, although she's aware and sympathises, but I can try again to see what they suggest.  

I'm not sure our son is against vaccination per se, he just wants nothing to do with any services whatsoever, in effect leaving us high and dry.   

it maybe ok for him to not be vaccinated if he doesnt go out anyway, the only risk of infection would come from people in the household he lives in. very low risk for him depending on how much everyone in the house socialises and goes out.

but yeah hed probably change his mind if he mixed and went out. i wouldnt bother with vaccine myself but i have job in very busy parcel company now where everyone comes in with corona so i will 100% end up catching it off these guys so i need the vaccine for protection. if i remained in my attic i wouldnt bother with it personally.

Wow, you are so lucky not to have Dyslexia and autism like me, I am only learning about full stops and comma’s,etc only entry level 3  reading and writing. Which is no where close to GCSE so academically I am low, at understanding. 

Mental and Medical health services really have no idea about the damage they do sometimes when our experiences with them are negative.  And I think that's a bit lame on the part of your GP.  You'd think they'd try and reach out directly to him somehow to address his past issues and build some trust with him.  I'd be tempted to call again.