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

[sergkuchkin]

NC for this because it’s quite identifying.

My DSis (mid-30s) has a disability that affects her mobility and some aspects of daily life. It was diagnosed when she was a toddler, and she’s always had medical support for it. But DM has spent her entire life pretending it doesn’t exist. She refused to let DSis use mobility aids when she was younger, insisted she was “just being lazy” when she struggled, and basically gaslit her into believing she wasn’t disabled. DSis has always been quite quiet and went along with it, but now as an adult, she’s starting to really struggle with the impact of not having the right support growing up.

DM still won’t acknowledge it. She gets weirdly defensive if it’s brought up and acts like we’re making a fuss over nothing. She won’t talk about adjustments that could help DSis and acts like it’s all in her head. It’s so frustrating because DSis is now trying to navigate adulthood with a disability she was never allowed to acknowledge, and it’s making life really hard for her.

I’ve tried gently bringing it up with DM, but she either shuts down the conversation or gets huffy and starts on about how she “did her best” and “didn’t want DSis treated differently.” I get that she probably thought she was helping, but the reality is that DSis was treated differently just in a way that made things harder for her.

I don’t know what to do. Has anyone dealt with anything similar? I just want DSis to be able to get the support she needs without DM making everything so difficult. Would love any advice on how to handle this.

TIA.

Why does she still have any say in what your sister does? Do less hoping and more supporting your sister! And yes you do know how to deal with it!! Stop discussing it with your mother and start being a help to your sister.

My parents have had similar attitudes. I work from home due to Aspergers syndrome and arthritis, able to claim PIP and have a blue badge due to not being able to walk long distances, but they just see me as being lazy. They don't see the problems I have on the inside. Having said that I live independently and I've not let them stop me accessing the services I need. You just need to ignore your mother and help your sister now.

Sounds like your mother is embarrassed by your sister.

I would stop being so gentle and tell her that she did make and is making DSis's life harder and whatever her feelings on the matter, you wont allow to keep doing that.

There used to be the attitude that any disability either physical or mental from birth was due to either something one of the parents had done "wrong" or that the parents own blood lines were "defective". And example of this was a relative whose father refused to have the child tested for autism because that would somehow imply there was something wrong with them, the parent.

There was also the view in the past that any form of disability was a defect that was shaming in some way for the entire family, and children were often either shut away out of sight or the disability covered up and ignored. I'm afraid there are still some people around who think this way.

there's also the possibility that by minimising your sister's disability your mother feels less shame for producing a child with a disability, sadly again this isn't that uncommon.

Exactly this

I think you and your sister could be a great team. I hope you can support her to advocate for herself and find good support now.

I'd begin with supporting your sister to call a charity related to her diagnosis that has a helpline, with a speakerphone call or similar. And try her GP - you could go together if she's willing. If her GP practice has a social prescriber, they can really help knit together some ideas and put you on the right track.

I'd agree with those who say not to focus on what your mum has or hasn't done now. You might have to talk to her about it if she tries to undermine or talk down any if the help or equipment your sister gets, but perhaps she will be happy to see your sister doing more amd getting more out of life.

Attitudes were definitely different when we were growing up

your DSis is mid 30’s, how old is your DM?

There must be records, you said there were physios and OTs involved, her doctor must have records of it all. Beside that if you become disabled as an adult you can still get help when there is no history of lifelong problems. My husband is disabled but it happened in his 40s no one has ever suggested that because he was a healthy child he can't get help now so I wouldn't worry about that.

Does DM have to be closely involved at this stage of Dsis's life? It sounds as if she was not helpful when help was urgently needed, but that's in the past now and the most important thing is for Dsis to get the facilities she needs to function better. Could she not just go ahead and look for what she needs and ignore DM's take on it? As in, 'Thanks for your comments Mum, but I need to get some professional help now and I'm grown up so please leave me to it.'

You say you do not wat your mother to feel ''guilty'' but she is guilty - very guilty. She was stupid and very negligent regarding your DS health. She needs to see the error of her ways and make amends asap.
As far as people saying she behaved normally for those days - completely untrue - we are not going back to 1930s/40s here..

💯 @Allergictoironing . This was my dad who probably was on the autistic spectrum himself, and his attitude to my brother, who has now been diagnosed in his 50s. Sadly he has inherited our father’s ableism and just wants to be “ normal” and not engage with any diagnosis even though it could help him understand himself and access help. It’s such a mess and I resent my late father for it.

I remember a pupil not getting the support he needed for high-functioning autism. I raised the issue when he arrived in Year 3, although he was not in my form. ( I am told that CBT could have helped, but past a certain stage, patterns of behaviour are too ingrained, but I'm no expert!) He was clearly finding social interaction stressful, and I'm sorry to say that some of his less kindly classmates would wind him up as a sure-fire entertainment, plus a break from humdrum lesson time.
I retired before he left the Junior School, but on return visits, I heard the end of the story.
After one meltdown too many, crisis point was reached, and the parents reluctantly admitted that he had arrived with a diagnosis already made. His parents did not wish him to be singled out or labelled, so "let him be treated just like everybody else".
The staff had experience of supporting "quirky" individuals, and were open to following specialist advice.
He finally flunked out of the Senior School, following the consequences of a heavy cannabis habit. As I said to my former colleagues, the poor little b***r had been blunting the edges, and self-medicating.
Denying a diagnosis will not make the condition go away.

It was normal in the 70’s and 80’s when I was a kid. If the sister is mid 30’s then she would be born in 85 ish? I remember relatives about that time fighting against an autism diagnosis because they wanted him to stay in mainstream school and get a standard education. The autism label then meant special school and “life skills” rather than GCSE’s. It was also a time when there were programmes in the us and other places claiming to “cure” autism.

i didn’t get a home computer until the early 90’s so there’d have been no google to inform yourself.

yes the mum did things wrong but probably with the best intentions. I don’t think there’s any point beating her up about it now. We’ve all fucked up as parents- but all we can do is make the best decision with the information we have at the time. All it will do is destroy the mother and the sister will be in exactly the same position. Time to move on.

OK @sergkuchkin I am going to be painfully blunt, you cannot change what happened to your sister growing up but you can help to change her future and make life more comfortable going forward.

I still see in schools, parents who are reluctant to label a child, lest it follow them for life and they do not realise that it is not an indictment on them or their parenting skill but it can be the key to unlocking help for them.

This is not good advice. The Mum doesn’t want to acknowledge it. Forcing counselling and a reality she doesn’t want to face is not going to work. That’s not how counselling works either.

Your mother is irrelevant now. She's made herself irrelevant.

Concentrate upon helping your sister own her condition, get help to live as an adult with this disability/condition and leave your mother to her idiocy.

How is she standing in your sisters way now though?

I have a medication induced neurological involuntary movement disorder called tardive dyskinesia that was caused by some prescribed off label antipsychotic after a head injury. My DM isn't that empathetic about it at times, and I often wonder if it's a general thing either with her generation (laged late 70s), or just that she's not going to accept her daughter is permanently harmed.

I've also had a high frequency hearing loss all my life, which she has been ok about but the lack of anything acknowledged as much as I'd like about my movement disorder hurts sometimes.

Maybe people who don't have the misfortune of health issues aren't really able to be as understanding of those who have them.

I know that is a great sweeping statement and I'm sure it doesn't apply to every loved one of those with disabilities, but it's hard to say anything to my DM because of it I feel quite alone.

You sound a wonderful sister and great loving support. I agree with PPs about leaving your DM out of things.

I wouldn't normally advocate for this route, but… assuming that you and your sister

• have no chance of convincing your DM that she (presumably unintentionally) hurt and damaged her own daughter (extremely unlikely — our minds protect themselves against accepting these kinds of things)
• don't want to cut your DM off
• won't be able to, or won't want to, hide the things your sister wants to start doing to accommodate her disability
• don't want to make your DM feel guilty, and
• don't want constant friction between you/your sister and her,

I honestly think that (depending on the nature of the disability) the only practicable route might be to effectively lie to your DM about the impact of her past actions— or, perhaps a nicer way to say it is to frame things in a way that your DM might accept.

You and your sister would absolutely have to be on the same page about this in advance, otherwise your sister would likely feel that you're letting her down, trying to gaslight her and rewrite her own history and reality, and siding against her with your DM. She might even feel betrayed by you raising the possibility of pretending to your DM that her actions were less damaging than they really were — only you know how your sister would be likely to react to such a suggestion.

But if you were both to agree that protecting the relationship could be valuable enough to make it worth cushioning your DM from the truth, you could try to find ways to suggest that needing help now doesn't necessarily mean your DM did the wrong thing to withhold help then. Like, claiming that as your sister gets older, things that her young healthy body might have compensated for in the past are getting more difficult to work around. That kind of lie.

It means your sister (and to some extent you) taking the distress onto herself and keeping it private from your DM, and finding a way to manage and process the feelings she has about both the original issue, and about carrying the ongoing burden of hiding her feelings and her reality — all in order to spare your DM's feelings and maintain the relationship. Which is extremely unfair, since your DM is the one who's responsible for the distress in the first place. But pragmatically, given everything else you've said, I can't think of another way to go forward without the kind of ongoing discord or relationship rupture that I think you've said you and your sister don't want.

I know this is a shitty answer and I feel bad typing it — I hope you do find a better solution.

Quite honestly I wouldn’t have kept quiet this long.

I would tell her what an awful parent she was and still is and that she made Dsis’s life harder.

Honestly I'm probably a similar age to your Mum & I can't fathom her attitude at all.

Things are always changing but to me refusing available help & making a child's life more difficult is hard to understand.

I agree with pps that you need to forget your mum & concentrate on helping your sister to get help now & come to terms with how badly she was let down.

I’ve tried gently bringing it up with DM, but she either shuts down the conversation or gets huffy and starts on about how she “did her best” and “didn’t want DSis treated differently.”

So she's capable of admitting she made mistakes when DSis was younger but still continues to make her feel like shit for needing help now?!

That's outrageous and she needs telling so.

I'd be putting all my support and care into Dsis and going low contact with Mum until she makes apologies and starts getting on board with fully supporting her child.

I’ve seen this happen within the deaf
community where a relative was never encouraged to learn to sign in the hope that they’d learn to lip read instead. It was an awful experiment and that relative had a very isolated childhood.
All in the past now thankfully but it sounds like you’re giving the support your sister needs now.
Edited to add - it was the school who insisted no-one signed at home or at school, not the family who would have learned had that been the recommendation.

@sergkuchkin what was the diagnosis she was originally given?

Many disabilities have supportive organisations/peer groups that offer programming, supportive groups, counselling etc. It may help your sister understand her disability better.

Definitely reach out to the GP and adult services too.

As for you Mum, times were so different, there was so much shame and worry about females being 'left on the shelf'. In my health care career I've heard thousands of older people and people in more modern times with different backgrounds say this. While I'm not excusing your Mum, it is hard to put what we know in this time and culture to what was present back then. Good examples of this can be found on Call The Midwife - that immense worry about fitting in and sadly the immense ignorance in the community too.

Best wishes to you & your sister (and your Mum too).

It happened but it was NOT normal!