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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

369 replies

ladybug201 · 04/09/2015 17:28

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.

OP posts:
OnlyHereToday · 04/09/2015 21:18

Medication has helped DS1 with anxiety. I remember saying to DP when DS1 was three that you could both give him 24/7/365 and it still wouldn't be enough. He needs us to help himself regulate, we're trying to give him the skills to do this for himself but it's a very slow progress.

We've stopped trying most activities and just find pleasure in the small stuff where we can. It's not easy, but it's ok.

TeresaGiudicesForehead · 04/09/2015 21:19

Op, I really feel for you. My Ds is 6 and has asd and I'm so very tired. I can't imagine what life will be like 34 years on. I hope things get better for you. No one can judge how you would feel until they've been in your shoes.

zzzzz · 04/09/2015 21:20

This reply has been deleted

Message withdrawn at poster's request.

Original poster
ladybug201 · 04/09/2015 21:25

Zzzz

Baffling, you say?

Would you explain to me what I should do to help a 34 year old man with his hygiene?

Should I brush his teeth for him?
Put him in the bath?
Wash his clothes for him?

He can do all the above. He doesn't wash his clothes because he likes the feel of them 'worn'. Typically, a hoodie will last a week before going in the wash, and he sleeps in it too. It will have food stains and toothpaste and all manner of shit on it before it finally finds its way to the wash! Short of physically prising it off his head, how am I supposed to wash it?

Bearing in mind how low DS's self esteem is, I have to be careful - I have on occasion said 'your feet smell terrible, you could do with cleaning your teeth ...' He drinks copious amounts of coffee which does make his breath pretty bad, but am I to remove this?

I don't think you realise how high functioning DS is. He is not a 'disabled adult' - of course he is, but not in the sense that I could, even if I wished to, infantasise him.

OP posts:
Original poster
ladybug201 · 04/09/2015 21:27

And your post zzzz - you really don't understand any of what I've posted.

I wish you could meet DS. You'd be looking at your post in disbelief after ten minutes, I predict :)

OP posts:
OnlyHereToday · 04/09/2015 21:27

What might help in situations like this is a mentor or buddy, some kind of peer who can help reinforce what to do.

AuntyMag10 · 04/09/2015 21:29

zzzz that's really unfair on the op! Maybe she just does not want to do his laundry? It's absolutely fair for her to not want to do certain things. She's caught between knowing his condition is life long, feeling fed up and also guilty for feeling this way.

You've clearly missed the points in her post explaining all this. Both the op and her dd sound like they support him very much, going over and beyond.

while this is how he will always be, he's 34 yo and the op is allowed to be fed up by now. Give her a break.

bialystockandbloom · 04/09/2015 21:31

knittingwithnettles what lovely, calm, insightful and understanding posts you've written.

zzzzz · 04/09/2015 21:31

This reply has been deleted

Message withdrawn at poster's request.

Original poster
ladybug201 · 04/09/2015 21:34

We have tried, only.

I appreciate the solutions, but realistically at this stage, DS is who he is.

Many of the following conditions go hand in hand with ASD - severe anxiety (can be very wearing having someone jittery and worried and seemingly unable to cope with ordinary events) - depression - low self esteem, complete nervous breakdown in 2010 - reliance on prescription medication, fascination with weapons, death and killings.

He can almost function.

But only almost.

OP posts:
Original poster
ladybug201 · 04/09/2015 21:34

How would you do that zzzz?

I would seriously like to know exactly how you would do this.

OP posts:
Samcro · 04/09/2015 21:34

Op i really feel for you. Parenting achild witha disability is bloody hard and once they are an adult it is harder, the disability is the same , but now living in an adults body.
Sadly all you can do is accept this it, it wont get better, but hopefully it wont get worse.
All you can do really is carry on loving him

KobblyKnees · 04/09/2015 21:35

OP - you need more support (that's what I meant when I said I thought there were other emotional issues here - you sound totally, understandably, burnt out). You need to focus on you, so that you are able to cope with him. Rather than your daughter paying for sky diving, or you paying for new clothes, can you do what most mums find difficult and be selfish and spend that money on you, on counselling, or nice time out for whatever you enjoy - then you may be able to cope with this incredibly hard life easier.

zzzzz · 04/09/2015 21:37

This reply has been deleted

Message withdrawn at poster's request.

Devilishpyjamas · 04/09/2015 21:38

The hearing something 15 million times is just autism though isn't it? It's pointless railing against it. Ds1 needs me to speak for him so I have to say the same sentence over & over again. It's annoying but it keeps him calm.

We can only walk in deserted places now (a year ago I could take ds1 shopping, swimming, take him to fetch his brothers, take him to the dentist by myself, take him to a beach cafe, take him camping - we even had a go at the cinema ). Now we can't do any of that, - we can't even put him in the same car as his brothers - but there's no point doing anything other than adjusting expectations and keeping trying. Yes it's shit, but it is what it is. I don't think there's much point fighting autism - you'll never win (I spend my whole time fighting social services but at least I usually - eventually - win those battles).

OnlyHereToday · 04/09/2015 21:40

That's scarily familiar and DS1 is a lot, lot younger than your DS. We still think we can hopefully make a difference of course but it's possible that we won't.

I'm really sorry it's like this, I feel for you. He has to want to change and to be able to try strategies.

Does he get DLA? Can a carer go in on a schedule? He sounds more disabled maybe than it might first appear?

Original poster
ladybug201 · 04/09/2015 21:42

No, you can't fight it, absolutely.

What I think a few people aren't understanding is DS fights it. We didn't drag him kicking and screaming to skydiving, ice skating and so on. He wanted to go.

OP posts:
Original poster
ladybug201 · 04/09/2015 21:43

No, he doesn't get DLA. He might if he applied for it, but he won't.

OP posts:
IsabellaofFrance · 04/09/2015 21:46

I have to agree with zzzzz.

I know its hard, but he hasn't stopped needing your help because he reached adulthood.

Original poster
ladybug201 · 04/09/2015 21:48

I quite agree and I have given it.

Would you, since zzzz has declined to answer, tell me how you would ensure a 34 year old man showers and cleans his teeth?

OP posts:
zzzzz · 04/09/2015 21:48

This reply has been deleted

Message withdrawn at poster's request.

Oswin · 04/09/2015 21:49

What exactly do you think the op should do Isabella? I think at the point she is she would have tried as many tactics as she could.
So what would you do Isabella?

zzzzz · 04/09/2015 21:50

This reply has been deleted

Message withdrawn at poster's request.

Badders123 · 04/09/2015 21:51

Op...my friends son is much younger than your ds but some of the stuff he comes out with actually scares me...he has no empathy AT ALL.
I'm wondering whether those who are criticising you have dc the same age, or dc that are much younger?
Not sure that comparing helping an adult is any way comparable to helping a child with asd.
It's really not that easy to force an adult to bathe/brush their teeth/change their clothes.

Oswin · 04/09/2015 21:51

Yes zzzz you could try to do all that couldn't you. Then if he refuses that? What then. Wrestle a grown man into the shower?

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