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 sorry it's difficult to read. It's one of the inherent difficulties of a public forum where you need to be able to vent, think aloud and seek support whilst knowing others are reading and being affected by it.

DS1 wishes desperately to have a normal childhood but it's just not going to happen. It is different and hopefully ok in parts but as he's in a specialist school it will never be normal. And that's fine by me and I know that aspect is fine by him too. For now. Long way to go yet.

Flowers - I'm sorry I hope my last post didn't add to that. I love my son just as I love my daughter, and his without his autism he wouldn't be the lovely kind clever boy he is. It's just that in his case, the autism can sometimes make things more difficult for him, and me. But my love for him is unconditional, and I'm sure is the same for you and your mum. The world is not always geared up for those on the spectrum but it's our job to find our way through it.

playnicely - yes I know. My ds has autism too, and like everyone else, my life is overshadowed every minute of every day with exactly those worries.

Also Flowers it's a bit of an impossible ask, but understandable desire, for non-neurotypical people to be 'normal' or to be expected to fit into an overwhelmingly and pretty hostile neurotypical world.

It's simliar to sexuality, you can wish you weren't lesbian or gay but that won't stop you actually being lesbian or gay.

The world has to change, people have to care and give to others and share the load for those who are unable to reciprocate.

without his autism he wouldn't be the lovely kind clever boy he is

You sound ever so positive, so you'd not wish it away ? I'm glad you're able to look at it like that. I've read a few articles along these lines in the past, which was why I dismissed asd as not a concern to me. Some people seem to have benefits from it which outweigh the rest. That's why I'm so surprised/unhappy to read this thread. It's almost as if different ends of the spectrum are different conditions all together.

Sorry bialy

There are no rules it seems! Looking for positives is always a good idea

Play, it's tricky, you can't really separate DS1 and his autism, it's a fundamental part of him. Of course I would like his life to be easier but I wouldn't change him. It's ok to be different. Everyone expects him to change and adapt all the time which is really hard.

Also it's all a bit pointless dwelling. There is no cure. We will try and help him all we can, as Lady has done with her DS, but he is unlikely to fundamentally change and that's ok, we need to accept and work with him on that basis.

Play I think you can only ever deal with how your DCs are at any point.

I am sure you will do the best for your DC, whatever they need from you.

I have just been doing a lot of reading about the braininhand app for people with autism - unfortunately it sounds like it wouldn't work for my brother (as when he is raging he isn't able to rationalise and calm enough to use something like that). But it's a great example of tech facilitating those with AS to live their lives and I hope there will be more of these type of work done.

Agreed that autism and the person are impossible to separate.

OP, I've read the whole thread and wanted to say from your first post -I HEAR YOU. I really do.
Its in my family to various degrees and the bastard thing about ASD is that no size fits all. So you really have to sift through piles of well meaning advice to get the odd gem.

I know you'll have researched it to death and the only thing I'll say is that I'm damn sure that one day in the next few years someone out there will be able to tap into the complicated mind of an autist and find a way for us all to rub along together.

Continue to vent. It's healthy to.

Play

I honestly can't tell you - for DS, ASD manifests itself in many 'classic' ways. His behaviour was first flagged as a concern when he was 3 with the comment 'X doesn't try to please.'

You can imagine how difficult parenting him was as a result.

My utter, utter sympathy OP.!

I'm in awe of the completely evident deep love for your son... Dealing with a hideous, unrelenting situation..

I wish you the best day possible

Another for you OP. I really identify with your worries over his loneliness. DS has ASD and the hard part for me is that whilst he hates being around other people his age he is lucid enough to know that he is different and at times feels incredibly sad to be lonely.

The only thing I can suggest (which you've probably done) is to join a council run club for others like him so he will have some company.

I wish you the best OP. You sound like an amazing mum and don't beat yourself up about these very natural feelings that you're having.

I'm sorry but your every post oozes lack of acceptance of the way he is.

All the time you are measuring him against neurotypical standards and therefore you are experiencing way more traumatic than is necessary. Your son is giving lots but it will always fall short of neurotypical standards because he is not neurotypical.

For example. As and adult with the choice of whether he comes out for a walk with you; it is fantastic that he choses to do so. So what if he doesn't talk as you walk? Walking in silence is a leant skill. Usually we use talking to engage the other person which in turn reassures us they want to spend time with us. You wont get that feed back. But if you can accept this, them just being there should be enough.

And already there is something healthy you can do together.

Your son doesn't need fixing. Or even if he did, he is an adult and just like any flawed adult if they don't want fixing you can only accept them the way they are.

As a carer you can never give more than you emotionally and physically can afford to loose. Which is why you must start setting those boundaries. Your son does not have the capabilities to work them out for himself. Therefore he will keep pushing, because he can and you will be used because you DS doesn't understand the difference.

You have had some fantastic advice from maryz and dervil. It will work. But it does require a massive shift in your thinking.

I would second that. You have been a little bit cross with some of our postings on here and to me that says you aren't as happy as you claim to be.

He won't and can't change so you need to, for your own wellbeing.

I had to read this entire thread. I have no relatives with special needs but I used to volunteer to help people who did and from my few hours a week, I could get the smallest glimpse of how very exhausting and draining it must be, and how nobody could possibly understand if they haven't lived in day in day out for years with no chance of respite. Even as a teenager I wanted to smack the pursed lips, smug, 'oooh, I would NEVER accept that from my child, I would do xyz' brigade across their stupid, ignorant, vapid faces and scream, "DO YOU THINK THEY NEVER TRIED THAT??" People who have actually been in the situation have more to say, but every person is unique and every situation is different.

I don't have any practical advice, OP, except to ask that you make sure you are getting the support YOU need (friends? a support group? I am sure you know all this) and to make it clear that your patience, bravery, resilience and love for your son all shine through like beacons. It is entirely possible to love your son and not his condition, nor the circumstances it forces you all to live in. And your daughter is clearly a diamond...what a great job you've done with her.

Toffee

You don't understand, do you?

I didn't start this thread to:

complain about DS
demand DS to be different

I started the thread for me. You're absolutely right that walking along in silence is fine for DS. For me, it is boring and miserable.

You don't seem to understand, despite countless examples of my boundary setting (no, not now, I'm busy, don't come round, I'll ring you) that I have boundaries in place. No, they aren't as strict as some would have them but as I've explained that wouldn't work for us anyway.

I accept DS as he is because I have no choice but I reserve the right to feel sadness about it.

And do you see how - if you dare complain - how quickly the attacks on YOU become?

It's your fault. You aren't setting boundaries. If you did THIS, why, all would be well. You're doing this wrong, what you need to do is this. You need to change. You need to do this, do that, go here, go there, see this person, see that person - no.

I know my son. I know myself. I know I've reached a point where I do what I can when I can and its my best, it really and truly is - but.

Think about how I felt 34 years ago when my baby was put into my arms.
Is this what I wanted for him? No.

For years I have heard variations of 'this is your fault, what a terrible mother you must be' - including from DS! - and one does become weary and defensive.

Now before anyone jumps in, no one, explicitly has said 'it's your fault you feel this way.'

But I can't put a complete lid on sometimes upset, sometime frustration, sometime anger. I don't show it to DS as he wouldn't understand anyway. But it's there and I'm refusing to accept its my fault to feel natural emotions. I feel sad because the situation is sad, not because of my lack of boundaries. I feel frustrated because DS is frustrating, not because I don't have DS free Fridays or whatever. I will keep feeling what I feel because it is normal and a bit of frustration on here doesn't mean I storm about in a haze of anger and misery.

It's frustrating telling people something and them not believing you.

So - thank you for the advice and support, I will deregister now, I think, as I am becoming upset and I don't want to - I came here for support. Thank you so very much to all those who understood. It means more than I can ever say.

You're right. I don't get it. I get that it's crap but it is what it is. I didn't have any thoughts about how things might be, they are who they are. I didn't expect all the problems and issues but they are there anyway.

I saw a thread the other day about someone who was contemplating working to the point of not seeing her kids to give them the best private education she could. I do not understand this focus on sacrificing yourself for your kids or doing anything for them. That doesn't seem the point of parenting at all to me.

But anyway, glad people sympathising has helped a bit. Sorry for adding to the discussion in a way that might not be helpful.

My oh my, this thread. OP I'm right behind you on this. Some utter nonsense has been posted supposedly telling you how to do what you've been doing for the last 34 years. "Tell him to have a shower". Amazing. My boy has ASD but he's still young. He has the same attributes as your son already. Exactly the same pretty much. Makes me feel despondent tbh. It's not going to get easier.

I think this has been one of the most moving threads I have read on MN. It's really made me think.

OP, you have explained yourself perfectly and I completely understand why you posted. I can only think that some posters haven't read the thread properly. It's all a bit Groundhog Day with the offers of 'useful advice'

Good luck for the future OP. You have my upmost respect and admiration.

ladybug

If you are still reading, please don't de-register. Could you try on the Special Needs Chat area, with a thread explicitly as a support thread for parents of adults with ASD/lifelong conditions?

The Goose and Carrot thread is very much along those lines, but is mainly frequented by parents with children. Have a little read - you will see that it is there just for the purpose you are looking for. I'm sure you would be welcome to try it out, and then decide whether you need a different thread.

Take care OP, it has been very helpful to me hearing from you and the other posters with grown up DCs.

You’re a great Mum ladybug. I also learned a lot from what you said on this thread. Hope you got something positive from it yourself.

This thread is an important one, its brave and moving and I'm glad it has brought you some comfort in some ways ladybug

I haven't attacked you I haven't blamed you. No one says that it isn't hard.

But to paraphrase a Facebook meme: if you judge a fish by it's ability to climb a tree you are always going to be disappointed.

If what you are doing isn't making you happy you need to do something differently.

Lots of people had tried to say that on this thread. I'm sorry if I was too blunt.