Mum has denied DSis’s disability her whole life - I don’t know how to deal with it anymore

If DSis is an adult, she can apply for benefits/supports on her own. She doesn’t need your mother at all. Medical history and/or school reports will be of benefit.
Just leave mother out of it. She is superfluous to requirement and will only affect mental health issues at this stage.

The thing is, if someone needs extra support, how is it helpful to treat them “the same” ie not give the extra support needed?!
Some parents are in denial about their child’s disability, as if it’s somehow their “fault” which of course it isn’t.

Would your sister allow you to go with her to discuss her issues with her GP? If so go in with a list of her current issues and difficulties. They can pass on then to physios, OTs, etc. Is she under a hospital consultant for her condition? When was she last assessed?

The key thing is to refer her to Adult Social Services and if its done as an acute emerency referral (i.e. phoning up as concerned because of X Y Z issues) then they will get involved alot quicker. Thy will also refer her on to OTs, equipment etc. You can do it an a concerned family member, or she can do it as a self referral.

He is now 21 and very healthy.

My at the time 3 weeks olds heart stopped beating and he stopped breathing. I phoned my MIL from the hospital as he had been given 20 mins to live and I wanted her to see him. She told me to stop being so dramatic and walked into the hospital shouting at my ex husband for crying on my lap. He had resuscitated our son on the living room till the ambulance arrived. He was in shock. I told her to go see her grandson for the last time and she walked in on him being resuscitated again and realised I was being dramatic and her son had every reason to be upset She always made out that day didn't exist because he became a very healthy child with limited heart issues from that day.

She died in 2019 and I never forgave her.

I agree that you should stop worrying about your mother and help your sister to self-refer, maybe she could benefit from counselling as well to help her be more assertive.

I have a very mild disability and actually, I had plenty of support as a child, so that's good. BUT.... my parents never referred to it as a disability or acknowledged it as such. There is no doubt they did a great deal to support me, but even now, my dad gets quite defensive if there's ever any suggestion that it causes me any issues. He can cope with conversations about treatments I might be having but not anything that suggests that my life is harder because of it.

My advice is bypass your mother. Your sister needs to access support. She's an adult, she's 'independent". She needs to adress what she needs NOW and whatever it is she needs now has no bearing on your mum. If your mum tells her NOT to access that support, you step in politely but firmly, "Mum, DSis needs the physio/whatever it is and it will make her life a lot easier. Please dont' get involved."

Can I just say what an amazing sister you are 🌹 it makes me so happy to see how you want to support your sister the way you do it really does because I went through similar with my children and their father . My youngest son we or rather me knew from the off something wasn't quite right with him but his dad wouldn't have any of it and during his meltdowns even as early as age 2 would scream at him to grow up but I had raised 3 others before him and knew this wasn't typical terrible twos time went on I split with abusive dad and fought for my son while his dad went Into denial and ignorance I went to all assessments and meetings alone and at age 9 he was diagnosed with a 4 year learning delay emotional delays and learning disabilities and at age 13 he was diagnosed with social communication disorder so on the spectrum which I always suspected but again his dad had none of it he needed to grow up apparently. Now he's 22 and with mine and his step dads support he's just completed a 5 year IT course at college and he's as close as ever with his siblings my eldest told me if anything ever happened to me he would be his guardian not his dad I couldn't be happier , my daughter now has 3 children of her own one of which has a condition which comes with autism she was with diagnosed with both at 18 months old and yet he accepts her and everything she is no questions asked including all her disabilities and I have no idea why to this day he still won't acknowledge his own sons but will accept our granddaughters it truly baffles me but anyway i just wanted to share that you aren't alone in these similar battles but also wanted to acknowledge what a fantastic sister you are to her be brave now even though it may get tough with your mum your sister and her future are important and your bond speaks volumes and I'm proud of you 🌺

You really need to support your sister. If you're aware of your mother still trying to stop her getting help or being negative about it, obviously you need to close her down every time.

@sergkuchkin your poor sis. Having been in your sisters shoes in a very similar (albeit not identical because different diagnoses) situation I cannot emphasise how strongly therapy is helping me dealing with that block of "there's nothing really wrong with me I need to get on with it" . The voice from my father telling me in putting it on and that in a shame to their family and that I am the way I am because I have sinned against God etc still tries to raise its ugly head at times but it's getting fainter and fainter . I now am surrounded by people who do validate and believe my experiences, although when I have a new care worker (I live semi-independently now) or a new friend comes into my life there's a a huge fear and sense of shame that they will think I'm faking it, or that "everyone has a label these days" and I feel very sensitive to any idea that they are sceptical of me, even a tone of voice or facial expression can trigger this . I am learning to not jump to conclusions about people assuming I'm faking, et c and also questioning the self doubt in my head.

I also found reaching out to others with similar disabilities helpful, I was fortunate enough to find a local group in my area. I hope your sis can find a supportive network of people, it's taken me a long time, and it isn't easy. I wish her all the best.

I am glad for her that she has a sister like you. Keep on being in her corner. Whether your DM will ever change I can't say, sadly it's unlikely. 💐💐💐💐

Different situation but both my parents and dhs parents have been like that about ds asd. Almost like if they pretend it doesn’t exist it’s not real or like it’s something bad. I called them out on it and talk about it lots so it’s normalised it more for them.

This is trickier, it’s unlikely your mum will see the error of her ways. I’d focus on supporting your sister to move forward, if she doesn’t benefit from having your mother in her life she could take a step back. Some counselling could help her too.

Ah ok , I had not read all posts , just have.

In that case , you’re right. It’s not Mums choice. I would say OP support your sister to look into how she can get a diagnosis now if that’s what she wants

@ForeverDelayedEpiphany I have a moment disorder issue (what was considered tardive dystonia but current doctor calls it Functional Neuro logical Disorder (FND) from an old school antipsychotic. I have faced the same reaction from family, even though I have significant mobility balance and muscle rigidity issues . It sucks. You have my deepest sympathies.

I also suffered from ME/CFS in my teens and 20s as well as significant mental health issues including EUPD/BPD and significant self harm and faced same attitudes from parents and my sister as your sister @sergkuchkin . I was told I was attention seeking, lying troublemaker who was a burden on society . A waste of space. They had the same reaction when they found out I had been sexually abused as a teenager. It has made me quite anxious about not being believed by healthcare professionals and other people. I often feel I can't really be sick, it's all in my mind. I've had to hide the extent of my issues from parents because I get questioned about whether I'm really that sick by them.

I also hadn’t really thought about how difficult it might be to get things in place now because there’s so little on record

Is there a diagnosis? What is she struggling with?

If your sister doesn't live with your mum, she doesn't need to know about any of this, does she? Your sister can do it without her.

I thought this too.

One of my family members was like this with one of their dc. Just left them to it, they were extremely vulnerable it's a wonder they survived to adulthood tbh. They lost their sibling when they were around 9 (( through illness )) and I'll never forget someone who spotted them weaving in and out of the traffic on their bike ' they've already lost one child are they trying to lose the one they have left as well ' 😬

In that case it was a condition that causes physical problems and learning difficulties. They were left to it. I honestly don't think they'd get away with that now. Poor sods now in their 40s and still wets the bed as their attitude was ' they can do it theyre just lazy. ' Which was their attitude around pretty much everything relating to disability 🙄

It sounds like DM is now a complete red herring except to the extent that she has residual psychological power as a small voice in DSis's head telling her not to seek more help. I don't think changing DM will help. However, changing the small voice in DSis's head through counselling and your encouragement might.

Your dsis just needs to take responsibility to get the appropriate treatment for herself as of from now. Looking back is not going to help her move forward. Can’t see how berating your mum for it now is going to help your dsis navigate her disability going forward. You’ve said your piece so your dm is aware of how you feel she failed your dsis. Not sure how your dm can now correct this? Your dsis, with your help, just needs to research how to put in place help now needed.

I was teaching in a special school at that time, and there was very much a trend towards parents treating their kids with disabilities as 'normal'. It was the pendulum swinging away from the opposite, where disabled children were hidden away as something to be ashamed of. It was well meant but country-productive. And there was a huge thing about 'not labelling' such kids.

It was an uphill battle for us as professionals to convince parents that a diagnosis isn't just a label. That it was the key to unlock help and support.

None of those parents, like, I assume OP's mother, were being deliberately cruel or unkind. They honestly thought that treating their children the same as everyone else, was the right thing to do.

Sadly, as in this case, the children often ended up paying for it, if the parents couldn't be convinced. But the advice to confront the mother and tell her that she was a terrible parent, would be a cruel and unhelpful thing to do.

@sergkuchkin all you can do is encourage your sister to get the help she needs, and suggest that she gets some counselling support to give her 'permission'. It might be that there's a charity aligned with her condition that night be able to help with counselling.

Maybe stop pussyfooting around her and tell her straight?

And what, exactly, would that achieve?

So its a phsycological block your DSis has, with your mothers voice in the back of her mind all the time?

First step, therapy. She wont be able to take the next step of reaching out for help, until she has silenced that voice.

I wont say what I think you should say to your mother because, as the mother of a disabled son about the same age as your Dsis, it isnt nice and it isnt kind.

I think you need to forget about your mother and instead talk to your sister and tell her you will support her and assist her in obtaining any help she needs.

We had a similar thing happen with a cousin. According to her family she was dyslexic, and left handed. Actually she had a mild case of cerebral palsy and did amazingly well considering she never received a diagnosis or help. Adulthood was really hard for her. Eventually she had an accident and had an mri/scan. It quite clearly showed her neurological deficit. She was in her 40s before she got the support she needed - life became a lot easier after that. I'd say to this day some of her siblings think there was nothing wrong with her.

so far as I can tell, OP's sister doesn't have any cognitive issues and does not live with her mother. It is therefore HER choice and decision what happens. Yes she may need help to decide and rehab and the right aids may change that but why discuss it with her mother? its not her business or decision.

I think you need a stern talk with your Mum. Being realistic here - there will come a time that your Mum isn’t around any more and your DSis will need support and that will fall on you . I think you need to be quite frank with her and explain that it will be difficult for you and - I don’t know the age gap between you and your sister- but there could also come a time that you are unable to do that. Things need to be put in place for her.

Maybe go to a place that offers advice on this - there are usually places around focused on giving advice for carers etc . Adult social care may be able to offer support in terms of respite , supported living etc .