The Older Generation

Heledhil said:

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?

you know heledhil, tho im the same person i was when my partner and i met, i have changd a lot to 'fit' with his autism and its needs, i find i have had to adapt and become a different person, and its not been easy

and honestly, no i havent had any help, and i have been shoved to the side and not just expected to cope with it all, but just have to, whether its obsessions, stress, routine  changes meltdowns or agression i have to deal with it all on my own. it has not been easy

obviously i cant understand from your view point about being critisized and to blame, but i do know ive had a lot of judgment for soem of his less social behaviours

its not easy, but you know, i say stuff them, they dont matter, if all they are gonna do is blame judge etc, then they obviously dont have much abillity to think or evne help

that shows more about them than it does you or your son

the cuts are affecting a lot of good people who needed that extra help and money,its just another by product of this soceity we liv ein right now , we just have to push through it and keep going, make sure we have what WE need

It sounds as though either your son's service providers have no autism training, or they are being extremely arrogant (maybe both). If you are a carer, perhaps a carers assessment would be a place to voice your concerns about communication? I also think you need some form of mediation, someone to try to allow both you and the organisation which is paid to support him, to air your concerns and try to create a more positive relationship. Also, your son is legally entitled to ask for a local council needs assessment at any time, and no-one has the right to stop him.

But most importantly, do you know what your son wants? Does he want you there as his Mother, who he loves, or as his carer as well? If the former, he may feel you are finding it difficult to relinquish your habit of caring. But if he actually wants you to stay involved in the practical issues, any organisation claiming to be on his side has a duty to facilitate that, not exclude you. In either case, their rudeness and aggression to you is unprofessional. Has your son actually been threatened with losing his home if he wants your involvement, or is his anxiety more general? Maybe you and your son could talk about that in a neutral place.

I think you need to talk to someone about your worries, both about your own involvement and isolation; and your son's independence to choose who is involved in his support - perhaps the NAS Helpline could help you find a local service.

Do keep up this conversation, as you are not alone.

hi again - yes, I've had to pick up the pieces with a previous care provider so I know how you feel.  It's so worrying + debilitating + can drag on literally ages + ages.  The lack of sleep doesn't help either.  Would your son consider changing his care provider?  He doesn't need to stick to the same 1, even tho he lives in accommodation managed by that provider.  He can stay there + still have a different provider. That's what my son's got.  Also, have you enquired about getting a carer's assessment?  I'm not joking.  Altho my son didn't live with us, I requested 1 a while back because I was doing a lot of caring for him.  In the end I didn't pursue it because circumstances changed for the better.  (New provider.)  You can ask via your GP or SW.  Sorry if you know all this already.  It wd help to highlight the issues.  Is his care provider autism-specific or more a generalist provider?  bw

Hi Crystal - well, it's the organisation that provides his housing and supposedly to help him with 'social issues'.  They don't deal with the family - they are only there to support the person who is their client.  Being told to "butt out" (yes - those words!) and that I am not required at meetings is a pretty loud message.

I can't kick up a fuss without causing my son to feel he's piggy in the middle and threatened with losing his home. He is also desperately trying to 'lead his own life' but he isn't because he won't give me a moment's peace.

I'm really dismayed at how manipulative it all is - no attempt to work together to help him really develop independently.

My son really needs to go back to get more support and help from the CMHC team, but they've decided he doesn't need it.

As I guess you can imagine, I'm the one on the receiving end of his frustrations and panic attacks, when he goes into melt-down and needs to vent, and he is incapable of respecting boundaries.

But, as long as it remains 'hidden' and the key workers won't talk to me, they can pretend it's not happening.

But at some point I will 'walk away' - one day I won't be here any more as nature takes it's course.

It's good to have a response from someone who understands only too well - so thank you for your kind words.

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