To feel as if I hate having the son that was given to me

[ladybug201]

Unsure how to phrase that. Obviously don't hate DS.

He is an adult, with autism/ASD. Never had a "proper" job. Lots of studying, lots of short term jobs. Came round asking for money. As nice as could be - always is, DS isn't horrible.

But he's not interested in anything that doesn't affect him. Doesn't ask after me. His sister started a new job today - she says the same, doesn't ask after her, just drones on about his own life and to be honest it's nothing we've not heard a thousand times before. How many times can you say oh, that's nice, great, fantastic.

I don't know. I wish I had a son who didn't have this condition.

By was 'born different' I mean wasn't born severely autistic. Different than now.

Change what you do

We do/have. Our entire family life was based around what DS could cope with.

Now - what can we do?

Anything involving food in public is out, so that rules out restaurants, pubs, coffee.

Going for s walk? Sounds harmless enough doesn't it? Generally we walk in silence. I will say 'oh look, there's a bird of prey - is that a buzzard?"
'Ohhh yeah. So yeah, I was wondering what you think of this?' (Proceeds to tell me something I've heard at least seventeen times before.)
'Yes, DS, as I've said, it sounds difficult.'

Someone says a hilarious joke and he doesn't crack a smile. Tell him a school friend killed themselves and he starts giggling.

Don't judge me. For eighteen years I did it all. I made sure his teeth were brushed, he was clean, his clothes were clean. I stood up for him against teachers who didn't get him. I hired tutors to get him through his exams. I bought a small house for him to ensure he was not left vulnerable financially.

It's still not enough.

It never was.

YANBU. Having a child with ASD is torture. Those who deny it are either extremely lucky, or in denial in general. It's hell. I'd give everything I have to make it go away.

And nothing is ever, ever, ever enough. Ever. I'm resigned to that already and DS is only 8.

Do you have other support OP? To be honest it sounds like other emotional issues are at play here too

op. It sounds really tough and you do sound like a great mum for still dealing with it all. Ignore those few pp who are trying to bring you down. Your feelings are valid and you are allowed to feel the way you do.

Practical advice -

Don't just buy him new clothes. He won't wear them. I used to have tons of clothes with the labels still on. Can he be helped to buy his own online when he needs them?

He probably doesn't want to go out and try new things. I would hate that, it makes me extremely anxious and angry. Speaking from experience it probably was way too cold (for him) at the ice rink, not just a case of 'his way or the highway)

I'm at my happiest at home. Where I can occasionally blather on about my latest thing to whoever will listen.

Self esteem and security for me only happen when routine is completely established. I definitely wouldn't feel secure if I kept getting taken to different places and expected to cope for other people's sakes.

Don't know if any if that helped you. Probably not but thought I'd share it anyway.

I'm not sure they are, although it's true I have little other emotional support about this issue at any rate, which is largely why I have come here.

My husband died some time ago, and it's certainly fair to say we took in in turns with DS. You have to - otherwise you find yourself dragged into an Alice in wonderland like world where nothing makes sense.

But friends, as wonderful as they are, don't understand. Tell him no, he is an adult, you can't be at his beck and call.

My first grandchild - his niece - was born in June. The text I sent him can sum up my life.

'Hi DS! Pleased to tell you your sister gave birth to a healthy baby girl at 10 o clock this morning; her name is XXX and she weighed XXX. Can't wait for you to meet her. Mum x'

'That's great! I've got an appointment at the doctors later, going to ask for (medication) I could do with talking to you about it, when are you back?'

It's so innocent, isn't it? Saying 'DS, that's selfish, you should be asking about the baby!' is pointless - you can see how innocently the comment is. He genuinely can't focus on anything that's not him for more than a nano second.

Devilishpyjamas

I see, I'm sorry in that case I think most would wish for something different.

I just hoped my mum wouldn't think it because I was born that way.

Happy

You're absolutely right, and believe me I know form bitter experience the futility of buying DS clothes; however, we were at a stage once where my DD (a teacher) took her brothers favourite hoody for a school play. She said, completely straight-faced, one of the children was playing a homeless person.

It sounds funny when I put it like that but on a typical day you would mistake DS for a tramp. So I took him to a shopping centre and said to choose some clothes - loose, casual wear as he likes it, but clean and new.

He pulls his clothes and buys them large anyway, and sleeps in them. They are typically filthy and quite smelly.

New experiences - DS tells DD how unhappy he is, how lonely he is, how much he wants his life to change. She used to make suggestions - good ones - for things they could do together to meet new people. Ice skating flopped belly down, but she also took him sky diving even though she was scared herself, horse riding, camping, and every time she paid and he ruined the experience by whining.

The problem is, he is unhappy at home too.

He's best left, I realise, but left to be dirty, smelly, lonely and empty.

Hard to do to your own beloved child.

You have my sympathy op. You sound so down and defeated. How often do you see him? Can you make yourself a little less accessible just to give you some breathing and emotional space. Has he received any professional support?

He has received more support than anyone else I know - extensive psychotherapy, CBT and counselling. But ultimately, I recognise you simply can't change who someone is.

As for making myself less accessible, I'm not sure how I can without changing my phone number and moving home without telling him, and even if I wanted to - I couldn't.

Do you not think you are the one who now needs support in this situation, ladybug?

When I say less accessible, I mean what about not taking the midnight calls? Would that be something you can do.

Op are there support groups for carers of people with ASD? It sounds like you really could do with talking to real people who face similar issues. It must be so much harder without your husband to talk to.

I can't even begin to imagine how lonely this must be for you and your DS.

OP Yanbu and I think your posts in this thread are very honest and dare I say it, 'brave'. Ash as already happened, some people will find it difficult not to project your experiences and feelings onto their own experiences and feelings but I hope it won't stop you from posting again whenever you need to.

Also to devilishpyjamas - I hope your ds is able to surf again soon - he seemed to enjoy it so much.

In fairness to him, calling me at midnight is rare.

But again, it is the assumption that I am there purely to serve and meet his needs, no matter what the hour of the day or night, and more to the point, that I have no needs of my own. That any response to any emotional distress I may feel is robotic and insincere and is twisted back around to his own agenda ('I know JUST how you feel, I felt the same when ')

it doesnt sound like hes really ready to be living alone, even if the house you bought for him makes him less financially vulnerable.

Ds2 is a bit like that. He's 13, and he never asks me how I am, except as a pleasantry and never asks questions about members of the family or how people's holidays went. Luckily his charm and cheerfulness and genuine warmth offset a lot of these obvious egocentricities and tbh I think he really does care about all of us, just the words aren't there.

I think your description of the text from him - That's great! and then wanting to talk about himself and his problems/medication is probably an example of what him making a hyper link between one sort of family bond and another, it's just that he doesn't make it clear in words. He loves you, and therefore he assumes you understand his thought processes. You've talked about his sister and he assumes that now you want him to reciprocate by talking about HIS life.

I think what you are describing is empathy burnout. Every little thing he does is now irritating and maddening and sad beyond bearing because you are on a sort of red alert to his issues and insensitivity (as any mother would be). Can you ask him to do things for you, little things? Be very explicit. I want to you get do this errand for me or dig that hole for me. Go back to basic reciprocity gratefulness for small pleasures. I do this with ds2 because he wouldn't do anything for me without me asking him, he just doesn't KNOw. I think you need to try and build that bond again which will carry you through this really dark time by expecting very little but asking for more. Without rage. Everytime I see ds walk down the road energetically I feel happy he has two legs and enjoys walking, whatever the rest of the day might bring. His enthusiasms, even when tiresome, give me pleasure that he is finding happiness in something, even if it is planespotting.

Dh has just come up to me and said that ds2 is being a complete nightmare and driving him and ds1 insane (they are playing a computer game together) He is usually very tolerant of ds2 but I think everyone has several breaking points and it helps to share them with others like you are doing and dh just did...

The other thing that might help is that someone, somewhere feels the same about the world as your ds and there will be soulmates, clubs, places to meet. He is probably a bit like a depressed adolescent at the moment - I often think that one gets there in the end but it takes longer. Often people do feel very alone and depressed in their teens and twenties, and it takes a long time to come out of it, I know I did. Whilst still having some of the same issues as your ds.

He is 34 next month, Branleuse.

If you are implying I should have him move in with me - he did, for many years. He was exactly the same as he is now, except I quite literally never got a release from it.

He will never be ready for living alone, yet in another way he has to live alone because he is unbearable to live with.

Sorry ladybug I cant comment as I haven't been in your position. Just wanted to say this thread is really emotional and brave of you to be so open and honest about such a subject. Huge respect for you coming this far and I hope things can get better in some way.

Sorry if this is something you have heard a million times before- but what happens if you shout at him? Like if you physically tell him off when his clothes are dirty or he hasn't washed.?

sorry I missed a bit out there, just saying that at 34 someone with an ASC can be often emotionally at level of adolescent.

DS is 34. He isn't a toetured adolescent.

He sees the world through a set of blinkers. He sees one thing, and like a horse pulling a cart, it's whatever is straight in front of him. The world around doesn't exist. It's that simple.

It isn't selfish. Selfish would be seeing it and trotting on regardless. DS isn't like that.

But it doesn't make it any easier as he trots by you.

And when I say that, I do not mean that I want him to be an emotional crutch, I don't. But when DS focuses and lunges towards something, everyone else has to go along with it too.

I can't count the number of times I've heard I'm Feeling Really Nervous.

OP, it sounds incredibly hard. I don't have any advice, but wishing you moments of joy and happiness amongst the difficulty.