Just because they have needs...

Hi Jenny - it sounds like you’re having a difficult time - I’m sorry. What’s happened? 

Hi there.  It is simply the chronic nature of all of our problems taking its toll over time.  I'm tired and emotional and probably need a good sleep. 

Our cannabis prescription is still helping but, even at that, I have occasional breakthroughs of very negative emotions, especially during annual "milestones" (for which read "millstones" in our case) such as birthdays, anniversaries and Christmas.  Unfortunately we are now entering a two month period where a lot of these cluster together.  And this isn't helped when I can see others in my family buying then renovating their own homes, getting jobs and relationships and generally getting on with their lives.  And yes, the conventional ways aren't necessarily our ways, but there's been a long dearth of anything positive happening around here, whether in the orthodox ways or not.  

In a way, I can cope with specific things happening - i.e. one off negative events - much more easily than a daily grind which doesn't let up.  Maybe I'll just have a cry then a sleep and re-emerge feeling as though I've had a good vent and be good to continue.         

Hi Jenny,

coincidentally I had a bit of a cry today for similar reasons. It can all feel so overwhelming sometimes can’t it? It’s not just one thing - it’s EVERYTHING. And the lack of support. The news is depressing too - you feel if there are no services now it’s only likely to get even worse! We feel very isolated sometimes - there’s no help really. I think having a cry is probably a good thing really. I feel I’m always trying to be strong - and I get so tired and worn out. It’s best to let these feelings out. I’m sorry you’re feeling this way too. It’s not surprising- I know that like me you have your own challenges and are also doing you best to support autistic children with all their challenges. My youngest is feeling very down - and everything I try and do to help him this week has not helped  at all. This makes me feel like a failure as I want more than anything in the world to help him. Sometimes we have to accept that we can’t always help - however much we want to. But as you say - have a rest, a drink or whatever helps, and tomorrow is another day - and hopefully a slightly better day. And if tomorrow isn’t better - then maybe next week. Or next month. But life is too precious to give up on it all. x 

Hi Jenny,

coincidentally I had a bit of a cry today for similar reasons. It can all feel so overwhelming sometimes can’t it? It’s not just one thing - it’s EVERYTHING. And the lack of support. The news is depressing too - you feel if there are no services now it’s only likely to get even worse! We feel very isolated sometimes - there’s no help really. I think having a cry is probably a good thing really. I feel I’m always trying to be strong - and I get so tired and worn out. It’s best to let these feelings out. I’m sorry you’re feeling this way too. It’s not surprising- I know that like me you have your own challenges and are also doing you best to support autistic children with all their challenges. My youngest is feeling very down - and everything I try and do to help him this week has not helped  at all. This makes me feel like a failure as I want more than anything in the world to help him. Sometimes we have to accept that we can’t always help - however much we want to. But as you say - have a rest, a drink or whatever helps, and tomorrow is another day - and hopefully a slightly better day. And if tomorrow isn’t better - then maybe next week. Or next month. But life is too precious to give up on it all. x 

Yes.  It all feels like too much and I mistrust services after all of our negative experiences with them.  

I feel blocked or thwarted.  My sister is going to her daughter's graduation this weekend.  I daren't leave the house because my husband can't cope and I fear what I might find when I return.  The coffee definitely helps but it's not looking as though I can turn things around here.  Locked in.  For reasons which, although I have a vague idea about, ultimately remain obscure and not amenable to our efforts or good intentions.  

I'm doubting that I have what it takes to be a longer term carer, although I suspect many carers will feel the same.  I honestly didn't think that parenting would get harder as they got older.  

Yes. It’s not surprising we have days like this. It’s a lot to deal with - and so often without much help or even encouragement. I think sometimes you just have to let yourself admit that it’s hard and that - today - you have to have a moment where you let yourself say “I can’t do this” - even though you know you’ll get up tomorrow morning and feel that you probably can. And a stiff drink or whatever else helps is a probably a good idea :) 

I was just thinking today that just knowing there was a bit of help out there if we ever needed it would make a big difference. I don’t have that. My mum has dementia and my dad is completely unsympathetic, unhelpful and judgemental. My husbands parents are both dead - and our siblings are not there for us on any level. It’s really hard not to have family who care. But we are where we are and we can’t change that. We don’t have close friends - like many autistic people. So it’s just us - and on days when I feel particularly lacking in confidence and vulnerable I feel the lack of support really deeply. It helps to come on here and know that many other autistic people understand. I hope you enjoy your coffee - I only wish I had something similarly soothing!

Absolutely!  Thank you. 

And yes, we may feel like failures, but we absolutely aren't.  We also often need to ignore any sociatal standards, including our internalised stuff, because we're in an entirely different situation from the majority and those take no account of what we're struggling with.  I find it hard to be on a different path from many families around me, but I have to, and often do, find some intrinsic worth in all of this.  It's just that I also need some time and some creature comforts.  At the moment I am enjoying a "medicated" coffee.  :)