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.

I'm not suggesting you change anything you do with him. I'm suggesting you change your hopes/expectations of him. Yes it's upsetting but it's less upsetting if you expect it to be crap. My son is transitioning into adult services now so I'm aware of the change.

As I said I found counselling extrememely helpful. It has helped me see things in a different way & as a result I am happier - even though our situation is much worse than it was wheh I had the counselling. Imo recommend it. But do look for someone familiar with autism,

I am married to someone with high functioning skills. The AS focuses his mind in some areas, in which I have still limited interest, but he wails etc.
now unemployed. I gave to do a lot of basic nurse maiding.

It's bloody awful. I love him to bits and I can see that his talents might not be so focused without the condition. And yes I have trained him, I am grateful to him for trying to please me and be amenable. But it's still shit and draining.

If it's any comfort, op, Sarah Hendricksx says that AS / AS marriages can be the most successful.

Happy, I imagine she was thinking about the whole you. I can't imagine DH without his special positives, he wouldn't be him. Hth.

I have no hope whatsoever devilish, but you do almost seem to be saying that in accepting my son's life is ruined, I can find peace and I'm afraid that simply isn't true.

Ladybug, I am so sorry to read your situation. I have a 4 year old with diagnosed ASD. I would say at this stage he is "high functioning"...however, I have seen how things can change over the years, especially with approach to puberty and trying to cope into adulthood. It scares the shit out of me frankly. I am an older Mum (46) and a lone parent to boot. A lot of how you describe your precious son resonates with me already...I can't and at this stage, don't want to, imagine what things are like for you, or for him. However, the truth is, he is probably quite happily bobbing along with no thought (that he is capable of) of the effects on everybody around him. I can't begin to imagine how tough that is. I can do no more than this and this and hope that somehow you find a path through it. The whole thing is beyond shit for everybody. I can't even make any suggestions as probably like you, it's trial and error on a daily basis. I wish I could offer you some more comfort. You're doing a great job FWIW

Do you ever get a break? Do you see him every day? How long for? Is there absolutely no-one else he'll talk to or anyone for you?

I had to stop phone calls with my DM who monologued every other night for an hour, I could not bear it. Reduced visits, changed to texts only and it's all much better. I actually look forward to her visits now. She still monologues but I just change the conversation or put the TV on and let her carry on. Not the same I know but I don't think I'd have any relationship with her if I hadn't made changes.

I think a cognitive shift might be a possibility for you, moving from the sense that his life is 'ruined', towards the fact that it's, well, just his life. (Have I expressed that properly?) At the moment you are clearly feeling bad at how it has all turned out for him but in actual fact he doesn't sound that fussed. So I am more and more thinking this is about you needing to get your own life back a bit from all the grinding down, and a sense of apron string cutting to happen despite the natural pull towards him you are likely to feel.

This is going to sound daft, but is he actually unhappy?
I get that he has issues with anxiety (due to his asd) but is he actively depressed?
On meds?
Sorry if you've already mentioned it...My brain stops working so well after 10pm!

BoffinMum...holy hell, "rules of rudeness", even at this early stage for me...so difficult to deal with in public and so many don't understand. Yet when you say that your child has ASD and others look at this utterly angelic looking, beautiful blonde little bundle of energy and you can see they're thinking "WTF?". I do the explicit explanation thing too, despite the fact it would be inappropriate for a child of that age who doesn't have ASD

But you have to accept how things are somehow, not doing so will just make you really unhappy. It's out of your control. His life has value, it's different and incredibly difficult and that's a shame but it's unlikely to significantly change. What choice is there other than acceptance? For him too.

It doesn't mean nothing will ever change but I think you have to just acknowledge this is how it is for now and accept that. Whilst still making a few changes that you can that make it bearable for you.

I have a decent with severe autism,he is that severe that he needs 2-1 support. I thank God sometimes that is that severely affected because for us that brings a good support package.
I don't think you are ever able to switch off or not be free to just be you and that must be very difficult.

Fucking autocorrect ds not decent!!

You are a fantastic mother OP, I am in awe. Your DS is so lucky to have you. And your DH dying, and you coping alone, visiting every day, hats off to you. Do you ever get a break? Many children, ASD or otherwise, would be v fortunate to have you in their lives.

Is it fair you are having to deal with this? Of course not. But you carry on because you have to. I wish you could make time for you to switch off totally from DS and his problems. Is this an option at all?

lady I have read the full thread, as mother to a 6yo DS with high-functioning ASD.

It does sound like the only obvious thing you haven't mentioned trying is some counselling for yourself. You sound burnt out.

YANBU at all.

Also, quite apart from your (very real) troubles with your DS, your life sounds really lonely. I can't help thinking that he would be easier to deal with if you were getting emotional support elsewhere - if I've understood right that you don't have a DP or close friends and your DD lives at a distance?

Sorry if that's stating the obvious. I don't mean to be annoying.

Is there anyway you could focus more on your emotional needs? E.g. counselling, as others have suggested. From your posts it sounds like you are so drained by thinking about your DS, you don't think any more about what you want and who you are apart from him.

ladybug your son sounds exactly like my brother. Uncannily so, actually.

God, the repetition is what does it for me. Today he has posted 37 memes on his FB about President Obama. He has done this because I suspect my mum has begged him to just stop talking about it to her.

It is so though.

However, my brother has improved quite a lot in the past couple of years. The main things that have helped him are citalopram which makes him less anxious and less hyper and getting DLA (pip) payments. He has used the money to pay for a gym membership which allows him to release a ton of pent-up energy. He also pays a carer (he doesn't call him his carer) to basically act as a bit of a friend/ mentor type person. They do odd jobs for old ladies, got fell walking, fill in forms (DB likes complaining and writing to MPs about his many, many concerns). This man also pushes him a bit to keep clean and to wash his clothes more often. My brother seems to accept the criticism a bit more from him. He largely ignores my mum.

My mum had to facilitate getting the DLA and the citalopram but they really have helped him and have given her a blessed few hours of relief during the week.

He has his own house but refuses to live in it so he's still with my mum at the moment but I think she's keen for him to move out part-time soon.

Anyway, just a couple of ideas for you. They may not help but I hope it is of comfort to you to know you're not alone.

My asd son is only three so I fear getting to your point. I fear he will end up in home ( seemly likely at this point).

Some other parents have done the "when I hold my hand up you stop" signal but for teenage asd kids. The kids do stop, if only for a moment but it's a "my head hurts, you told me that a billion times before". Time out.

This isn't a easy job. It's ok to say " this is a shit hand I've been dealt, my child has been dealt a shit hand, and his siblings".

It's shit. However you look at it.

Good things come out of it. I was listening to song "what if your making me all I was meant to be" I think yesterday.

I'm not the person I was.

Sometimes I'm a bitter cow, sometimes I'm a indestructible woman of steel.

As on page one of replies. Peaks and troughs

Lady, our local NAS society runs sessions for parents and spouses. Just places to vent and weep are important. Is that available for you?

Imo it's the softness of fabric that's important, once you gave found the right texture and removed all the labels. Old fashioned brushed cotton shirts and pyjamas, not tumble but air dried, not folded, not stiff, have helped. Ironed only if they become softer. The problem with fabric conditioner us that it smells and is also dreadful for sensitive skin. And putting them under the mattress to start that lived in feeling worked at one stage. ( just sharing tips, if you have any for water on face or washing up , gratefully received).

But we only go out to dinner if it's just me now. Too much anxiety and anger and loud conversations otherwise. Pm me if you would like a private vent. I obviously have it easier on one level but can empathise.

Believe me when I say if my som was happy I would be content for him to live wherever and however he liked.

But he isn't.

One of the problems, that I can stress strongly enough, is that he doesn't 'see' himself as someone with ASD. If he acknowledges he has it at all (rare) he brushes it away. It may be that as the months go on and his financial position becomes more pressing, he may apply for DLA.

TracyBarlow - it's the CAB for DS. Every issue known to mankind can be solved. And he 'goes into' places - 'I'm going to GO to the CAB tomorrow and ...' Same when applying for jobs.i have pointed out the overwhelming majority of communication these days is done via email or the phone but no.

He is a member of a gym and he likes boxing (not 'real' boxing) and swimming.

Tips are helpful, but the problem is that DS lives in a world so revolving around DS that if I shared that tip with him he would say 'oh, oh RIGHT!' - and carry on wearing the dirty hoodie.

Re counselling for me, I have done so, but apart from being a bit lonely from time to time I'm pretty happy. DS is just such a source of frustration and worry and sadness though. And I know he can't help it but I feel guilt, for him, for DD and for me.

Oh and can I just add - the apron string thing is not coming from me.

I visit him every day because he texts 'will you come round.' If I say I can't, he does, to give him credit, accept it - and then comes to me!

My running 'joke' with DS is 'no news is good news' and never has that adage been more true than with my son! If things are OK he won't contact me. But things rarely are OK in the land with someone with ASD.

Ladybug I know exactly what you mean. My son is 18 and we lurch from one crisis (real or imagined) to another. He texts me at 2 in the morning when I have work the next day, says nasty things to his brothers, is obsessive , king of 'I want things done/ solved yesterday.

I nursed him through years of poor mental health which crescendoed into being sectioned for nearly two years with psychosis after attacking me .

The whole atmosphere changes when he isn't here and he goes through jobs like water.

I love him dearly but he saps me of energy. He wants me to know the answers to everything. To fix all of his problems.

Yanbu, hope tomorrow brings more positive feelings xx

YANBU and it sounds really bloody hard. A couple of my colleagues have high functioning ASD (they function better than your son I think) and the lack of personal hygiene and odd behaviours resonates. I often think about how hard it must be for their parents, watching them live a life that's so very hard for them and making choices that they wouldn't have chosen for them.

OMG can you possibly pay someone to go in daily.

I would look for one or more people who 'pop' in to 'help him with the cleaning' or some excuse and explain to them that they are there to make sure he is tidied up, put his clothes in the washing machine, listen interestedly to his waffle. It would need 15 pounds an hour imo but even ONE hour a day would make a difference, especially if they gelled.

People are kind, it isn't their relative so not distressing for them to deal with him, please try this.

Am I the only one who thinks that this forum has become incredibly bitchy and judgemental, lately? Some of the replies on this post are just shocking.

My 16 year old DS has ASD. He is a lovely lad and I think the world of him but watching friends children get glowing exam results, enjoying their school proms etc has been hard. I'm not jealous, more I wish DS could have a slice of that "normality" for himself. I know how much he relies on me compared to his peers with their families, he faces a long journey to catch up on schooling due to late diagnosis and intervention and he struggles with confidence. Other people's attitudes don't always help either, there is still a lot of ignorance and judgement about autism. So OP I know where you are coming from.