Autistic brother makes it impossible for me

[IAmHereButNotHere]

As title says really.

He’s in a routine and will not break his routine, ever. So he lives with my mum, visits my dad Tuesdays, Thursday and Saturday.

He cannot cope with me being there too, I get in the way, not deliberately but I just talk when he wants quiet so we can’t be there at the same time. And he cannot cope at all with my 7 year old, who I’m a single parent to – just her being there upsets him. He says he likes her but can’t cope with being around her.

He can’t cope if mum goes out outside of his routine, so if she goes out at 10am instead of noon he can’t cope so I can’t go on daytrips with my mum as she also has to be back at a certain time. If she;s not there when he gets back from dads, he gets upset. If she’s there when she’s not supposed to it upsets her.

Mum got a new car the other day and he couldn’t cope with that either, keeps saying it’s not mums car.

I try to understand but it affects my life too. I can’t see my parents when I want to, I can’t ask them to care for my DD unexpectedly, I can’t just pop in when I’m walking passed, my mum can’t just get my DD from school or holiday club as a one off, everything to do with my parents and brother has to be organised down to a tee – my brother cannot cope with my DD being even in his house touching anything so any childcare is at my house and I can’t be a minute late because it upsets my brother.

Because of covid I haven’t seen my dad for over a year. Brother used to only go twice a week but he’s increased it to 3 times. I get weekends off but my dad has a hobby on Sundays with some friends of his who still work so I can’t see him then, I also get Tuesday off but can’t go then due to my brother. If I suggest he doesn’t go one week so I can I get told by my brother that upsetting his routine will upset his rhythm and he may never be the same again, my parents suggest it and get told that they need to consider him over me because of his autism – I sort of agree with that tbh he lives with my mum so should come before me and his AN mean he needs my dad more than me.

I am just moaning here. My whole life revolves around my brother. I love him but I am sick of having to consider him when I want to see either of my parents. I can’t go on holiday with either parent as it upsets my brother so much.

I am lucky I have supportive friends and good childcare options nearby, but I am mourning the relationship I thought I’d have with my parents. My DD barely recognises them.

I know I am VUR and prepared to be told so. Sorry for the rant and sorry if any of my wording is wrong or offensive, I don't mean to be.

[quote 5zeds]@BoaCunstrictor I disagree. I don’t think anyone is entitled to know your plans and if one is clear and means it I can’t imagine SS can do much to involve you in whatever process has been set up.[/quote]
This is laughably naive.

If a parent who has previously been caring for an adult child at home dies with nothing in place, you can't imagine SS aren't going to attempt to get family members to take on care rather than take full responsibility for all arrangements and costs themselves? Pull the other one, it's got bells on.

Clearly they can't force a sibling to take on care, but they can certainly try, and even if they don't and they accept that a full placement will need arranging, they're still liable to involve family members. Who will also be dealing with the immediate aftermath of their own grief.

This is why morally, the sibling/s would be 100% entitled to know. There's no question.

Thats ultimately why the OP isnt being unreasonable because of how it will effectively end up dumped on her at a moment where she will be grieving for her parents and dealing with their estate as it stands. At the moment her issue is her parents not doing anything to allow her the opportunity to see her and her daughter. But thats merely a symptom of the bigger outstanding issue here rather than the actual problem.

You've put it perfectly here. In the grand scheme of things, the lack of emergency childcare isn't a big problem (although damaging a relationship with a grandchild is nothing to sneeze at either). However, it's indicative of being unable/unwilling to deal with the larger problems coming down the track. The last thing OP needs is SS trying to tug on her heartstrings when she's vulnerable and grieving her family (just as the last thing her brother needs is a massive routine change and loss of his parents to hit at once). This might be the easiest path right now but it can't continue forever.

Thank you @BoaConstrictor.

I have said I don't feel guilty about not taking on the care of my brother, and I will stand firm in the face of any strong-arming by SS. That doesn't mean I'm not concerned for him. For him, as far as I am aware at the moment, my last parent dying will be the Big Bang. It's not his fault my parents (well, my mother) want to keep the peace now at the expense of his long term welfare.

@TheNestedIf

Thank you *@BoaConstrictor*.

I have said I don't feel guilty about not taking on the care of my brother, and I will stand firm in the face of any strong-arming by SS. That doesn't mean I'm not concerned for him. For him, as far as I am aware at the moment, my last parent dying will be the Big Bang. It's not his fault my parents (well, my mother) want to keep the peace now at the expense of his long term welfare.

Of course. And it also doesn't mean you aren't entitled to know whether the circumstances are likely to be such that you do risk harassment from SS immediately after losing your last surviving parent.

For what it's worth, I started a thread in Relationships a while ago about my issue under a name change. People didn't understand and just responded to the NC part, saying that if my mother really cared, she would make more of an effort to contact me.

I'm finding comfort that some people on this thread understand.

Sorry if I've derailed, OP, but thank you for phrasing this more eloquently than I could so that people get it.

@5zeds

Asking yourself honestly what you CAN do to help is NOT the same as suggesting anyone should take on sole responsibility for their sibling.

OP is not the parent and it's not her burden to bear. This is the exact issue that needed years of therapy for me - I'm not responsible for my brother, I don't have to forgive his abuse, I don't have to have anything to do with him. I'm not the parent, I'm a sibling. I wasn’t for a moment suggesting you were. I think you are carrying a lot of residual guilt that’s colouring how you read posts. For example when my mother was caring for her mother with dementia I couldn’t give her respite because I was massively overstretched at home. What I could do was ring her every day and let her rage/cry/laugh with someone who loved them both and she didn’t have to protect my grandmothers privacy with. If that was too gruelling then I would have found someone or something else to help. I love them and some paths are hard. It sounds like OPs father is trying to do more with his son, so they obviously are trying different models to see what could work.

But why SHOULD she think about what she can do?

Thats the point!

She shouldn't be being put in that position. Even if she is a sibling. Especially when her parents are refusing to effectively enable a proper long term care strategy themselves.

If we are talking about disablism then we should also be talking about how starting from a default position of assumptions that someone can do something is also wrong. We should be giving the opportunity to demonstrate and enable people to do things too. We should be looking out for parents failing to enable independence because its easier in the short term.

Of course this also requires a wholesale change of culture from social services too... Where they are actually looking to give support rather than block and with hold it until crisis point.

*Correction:

If we are talking about disablism then we should also be talking about how starting from a default position of assumptions that someone can't do something is also wrong

There’s some really odd angry blinkered thinking on this. There are countless families who use specialist facilities and countless families who don’t. One is not intrinsically good and the other intrinsically bad. My father in laws sister has lived at home cared for by family for just shy of 80 years. She is loved and the burden, such as it is, is shared. My own child will do the same and if his siblings couldn’t or wouldn’t support that we would make other plans. If my husband or other child was injured and disabled they too would live within the family, (assuming they wanted to). It’s not the only way but it’s a perfectly thoughtful and considered way to manage things.

I’m not sure why there is such disrespect for different choices.

He needs a mentor or coach for life skills!! There are charities that do that do this sort of thing! Not sure where you are based In the country - but my friend has gotten in touch with an autism charity - he has a Mentor who is also autistic teaching him life skills / how to live independently etc

Must be exhausting for your mum

Honestly @RedToothBrush that sounds like you think disabled people should be tested and if found lacking in the skill you deem important forced to learn them . Mercifully we all still have the right to live as we please EVEN if we aren’t NT

Your brother clearly has a life affecting disability. People on here saying "teach him some life skills" would probably say to a wheelchair user " learn how to walk". There is sod all care for adults with disabilities like this , ASC are useless and underfunded

It's really eye opening to me that there are so many posters on this thread who are going through the same thing. In real life I've never met another person who has an adult sibling with LD still living with their parents.

@welcome2021

It's really eye opening to me that there are so many posters on this thread who are going through the same thing. In real life I've never met another person who has an adult sibling with LD still living with their parents.

I was thinking that too and it's come up on other MN threads like this, all these people just popping out of the woodwork... sometimes think it's because there's such a culture of shame around NT siblings speaking out. It can be clearly seen in action on this thread - people attempting to shut down others discussing their lived reality with claims of ableism.

Yep!

38% of people with learning disability live at home with friends or family.

It can be clearly seen in action on this thread - people attempting to shut down others discussing their lived reality with claims of ableism.

Yup. This is what I've experienced my whole life. It's so so hard when people expect you to be saintly when presented with frustration after frustration in your family life.

Tbh people shutting you down and saying you're ableist is just so bad. It intensifies the feelings of shame and guilt so much.

Our feelings are valid and it doesn't make us bad people. We can love our family and be annoyed at the same time.

@5zeds

Honestly *@RedToothBrush* that sounds like you think disabled people should be tested and if found lacking in the skill you deem important forced to learn them . Mercifully we all still have the right to live as we please EVEN if we aren’t NT

No its not what i think.

But as has been pointed out on this thread numerous times its clear that the brother can do certain things with support.

And yet its been those shouting about disablism who has gone on about how he cant because he has autism. They have a default position which says absolutely that because someone has autism they absolutely can not do something.

I can't think of anything more disablist!

We should be trying to balance the reality of the world with personal circumstances and providing adequate to support people in a way which acknowledges and puts emphasis on what people can do rather than putting parents into a position where due to a lack of interest from social services they ultimately take the easier, short term keep the peace approach.

Thats not fair on anyone and is life limiting to all parties too.

Support groups and independent living will certainly be trying to explore and challenge expectations.

I’m just going to post this again for all other siblings - www.sibs.org.uk/

It’s nice to know I’m not alone with my feelings either.

My brother has been offered a flat within a scheme where other people with LDs live. They are lovely flats, with a garden, common room with comfy sofas and a communal kitchen. Staff live on site to help the residents with their day to day living and laundry etc. There is always something going on and it has a lovely cheerful friendly atmosphere. The residents clearly love it. If my brother moves there he will have the opportunity to make friends for the first time in his life. To live as a man, not a frustrated child. I can't thank his social worker enough for trying to make this happen for him. I don't know that he will take it, but I do pray he does.

Sigh, it's ableism, not disableism

I have skipped a few pages so have missed the actual post which said that blind people are incapable of cooking for themselves, but I did catch the bit where a poster said that not all blind people are capable of cooking for themselves and I would like to take exception to both statements.

Firstly, I am totally blind. I have started meal planning threads on here, I cook everything from scratch, I make my own pasta, made prawn and crab ravioli with a lobster bisq during lockdown just to prove that I can.

I run a cooking podcast but it is not aimed at blind people.

I am a better cook than most sighted people I know.

As for “not all blind people can cook,” well no. But not all sighted people can cook either. But there is no reason why not all blind people can cook. Most just haven’t gained the confidence to do so, and you know what the biggest reason is for blind people not being able to be independent? The fact they’ve been infantilised by their parents growing up, who have always done everything for them, and then by the adults in their lives who have carried on the trend.

I went to boarding school, and it was blatantly obvious which children were day pupils and went home to their parents every day. Because those children were the ones with the least amount of independence.

The fact here is that while disabled people often require adjustment, doing everything for them just because it’s what they demand, and accepting that there can never bee any kind of flexibility isn’t doing the disabled person any more favours than the people around them.

Yes the brother has issues with breaking his routine. But clearly he is capable of it, or he wouldn’t have changed the number of days he sees his dad.

I wonder whether the parents really have been unable to get help or whether they’re so afraid that the brother will go into meltdown that they haven’t dared try.

It’s possible to accept that someone exhibits certain behaviours, but that doesn’t mean that those behaviours need to be normalised because of how change will make that person feel when refusing to be flexible has an impact on others around them.

Isnt it funny how the people most concerned about prejudice and not understanding the needs of disabled on this thread are also the one infantilising the most.

Adult disabled people may need additional support in life but it should be appropriate and enable them to be as independent as possible too.

Thus a default of cant is absolutely wrong. It should be the other way around with support to fill the gaps.

@welcome2021 that sounds so lovely for him.

@RedToothBrush lots of people families live in extended family groups. Why is this different? Surely it depends on your family experience?

[quote 5zeds]@welcome2021 that sounds so lovely for him.

@RedToothBrush lots of people families live in extended family groups. Why is this different? Surely it depends on your family experience?[/quote]
And for lots of people this is toxic.

Why the assumption either way before proper uncoercised discussion over whether this is ok or not.

Consent and principles of consent matter.