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The Older Generation

Heledhil

I'm finding it very difficult as I get older (retired now) and my son (43) a very late-diagnosed Asperger's, faces more and more problems.

He has some help and there seems at long last to be a slowly growing realisation as to how much his condition affects him.  But the future is bleak, especially with the looming cuts.

For me, on my own, it's a life of increasing isolation as I am both excluded by the organisation helping him (it's how they work!!) and I have tried to find a group I can get to (I'm disabled physically now) to share ways of coping, but there is nothing even reasonably local.

Still, I find as a mother I am still treated as THE problem - whether it's blame for the original condition, blame for his behaviourial traits, blame for anything he can't cope with, blame for not being the perfect mother .................  it's very hard to be constantly criticised and to have no-one else batting on your side.

I wish sometimes I could just start walking and never stop.

Are there any other older parents or carers who feel they are simply shoved to one side, but expected to shoulder all the problems that arise?

Parents

  • hi - welcome.  My son is an adult although quite a bit younger than your son. He isn't aspergers.  He's in supported living.  When he was little + diagnosed I got the only 2 books in the library to read up on autism.  They both sd I was to blame.  I carried that guilt around for about a yr, even telling people it was my fault.  Then I found the nas + discovered the 2 theories about refrigerator mothers were discredited.  I don't think anyone's blamed me since that point.  I don't think either care provider my son has been with has tried to exclude me.  Sometimes I think they want to try out ideas which I don't agree with, because I know they won't work.  Sometimes I've had to really push things with a care provider, even a good one.  It's been because some staff are more suited to my son than others.   That's where tension can arise, when we start really pushing, disagreeing, etc.  There have been long times with another care provider where I've shouldered responsiblities they cdn't deal with, which caused real detriment to my health for a long time.  When the pressure's been really on + there's been no relief I've wanted to keep on walking.   I can't tho, because I'm his mum.   Can you let us know what his care provider is doing that makes you feel excluded?  Sorry if that's too personal, no offence intended.  I think as we get older, the years of loving, worrying, fighting for services, worrying about keeping those services, worrying about the standard of services, just worrying about what the future holds in general take their toll.  So many yrs.  And, as you rightly highlight, the dreadful cuts by the government.  Hitting those who need assistance the most while others walk away Scot-free.  Such an unfair society, so unkind.  bw

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  • hi - welcome.  My son is an adult although quite a bit younger than your son. He isn't aspergers.  He's in supported living.  When he was little + diagnosed I got the only 2 books in the library to read up on autism.  They both sd I was to blame.  I carried that guilt around for about a yr, even telling people it was my fault.  Then I found the nas + discovered the 2 theories about refrigerator mothers were discredited.  I don't think anyone's blamed me since that point.  I don't think either care provider my son has been with has tried to exclude me.  Sometimes I think they want to try out ideas which I don't agree with, because I know they won't work.  Sometimes I've had to really push things with a care provider, even a good one.  It's been because some staff are more suited to my son than others.   That's where tension can arise, when we start really pushing, disagreeing, etc.  There have been long times with another care provider where I've shouldered responsiblities they cdn't deal with, which caused real detriment to my health for a long time.  When the pressure's been really on + there's been no relief I've wanted to keep on walking.   I can't tho, because I'm his mum.   Can you let us know what his care provider is doing that makes you feel excluded?  Sorry if that's too personal, no offence intended.  I think as we get older, the years of loving, worrying, fighting for services, worrying about keeping those services, worrying about the standard of services, just worrying about what the future holds in general take their toll.  So many yrs.  And, as you rightly highlight, the dreadful cuts by the government.  Hitting those who need assistance the most while others walk away Scot-free.  Such an unfair society, so unkind.  bw

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