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.

Wow! You both need to stop seeing your DM as a good person. She’s belittled your DSIS, ruined her childhood and neglected her medical needs. That’s abuse! I don’t buy the old ‘attitudes were different then’ as if she’s mid-30s, she must have been born around 1990. By then, there was at least some understanding of additional needs. Kids in my high school class in 1992 had 121 helpers. I can time/date this as one assistant was my neighbour, it’s not based on a hazy memory.

That is terrible.
I remember watching the short film The Silent Child about a deaf little girl living with a hearing family who refuse to learn sign language. The scene that sticks in my head is her watching all her family chatting around the dinner table but having no idea what their saying or any way of joining in.

It’s clear from your mum’s initial responses she isn’t in the right place to reflect and recognise what she could have done differently so don’t invest anymore time or energy in trying to make her see sense. Invest it in supporting and encouraging your sister instead.

My mum was told I could be deaf when I was little. I have a lifelong condition that impacts my hearing and can only be temporarily fixed by surgery, I wear hearing aids when the surgery fails. My mum allowed the surgery but no other support and now says I’m “not properly disabled”.

She now uses the fact I’m not permanently deaf as an example of how experts don’t really know what they’re doing and actively advises my brother not to engage with referrals for his children. It’s very difficult but I just ignore her, she isn’t open to hearing the facts.

I’m a bit confused here. Your DSis is 30, does not live with your DM but is struggling because your DM didn’t acknowledge her disability? On the other hand, she was diagnosed as a toddler and had lots of medical support throughout her childhood. So who arranged the diagnosis? Who took her to all the appointments? And why are you getting involved with the issue now?
Maybe your DSis would benefit from some therapy to address any childhood issues she may have, but as far as your DM preventing her from receiving any support now, how would that be the case?

DM was very much of the mindset that if ignore something, it goes away.

I suspect it was more "There is no way I gave birth to a disabled child"

Yes there are two approaches which would help: practical help now for your sister, regardless of your M’s opinions, and some individual therapy for you and your sister to process the past.

Your mother is no longer an actor in this in the present and the solutions are outside of her.

But how CAN she "stand in the way"? Dsis doesn't live with her; she has no power or authority here; she isn't even going to know anything that you two don't tell her. The alternative to "being firm" is to just stop involving her in these discussions at all. You (plural) don't need her permission or approval to get Dsis what she needs; stop asking for it. Just help Dsis with the practicalities and support her emotionally and remind her, when necessary, that she's getting medical treatment for a medical condition and no, she's not being difficult or a nuisance at all, and if DM ever suggests otherwise, she should probably tell DM what she can do with her suggestions (or just change subject, or realize she's running late and has to go, or whatever works for her). Do things first and let DM find out naturally later (quite a lot later, if that's how things naturally pan out). Let her find out that Dsis has been having a regular physio appointment for months now or that she got crutches or whatever; just be both entirely factual and entirely unapologetic about the fact that X is happening and that you helped organize it. If she questions why she wasn't told, tell the truth: "Because it's tough discussing a disability in any sensible or productive way with someone who denies it exists". Or "Because it makes Dsis feel like shit when you call her lazy for having an illness, and she doesn't need that and neither do I". Or "What for? You never tried to help Dsis with any of this stuff when she's a child - I'm not holding my breath for anything to change now". Don't apologize, don't explain, don't ask for permission or forgiveness. Just support Dsis (who is lucky to have you) and leave DM out of it.

Don't ask questions, either. You've had all the answer you're going to: she did what she did because she didn't want Dsis to be treated differently. It's not a good or a valid reason, but it is the reason - she's not going to change her answer, and she's probably never going to say she's sorry.

And try to remember that Dsis's disability is physical, not intellectual, and it's not your job to manage her relationship with her DM. Maybe if you can show her that it's perfectly possible to make arrangements / decisions without discussing them with DM first, and that you don't have to ask for (or even want) her approval, it'll rub off on her and she'll gradually start feeling able to take the same attitude. But that's down to her. You can help her with the practical stuff; you can't fix the fact the she drew the short straw of mothers. Focus on helping her with what you can, and leave the rest to her.

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 .

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 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 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.

And what, exactly, would that achieve?

Maybe stop pussyfooting around her and tell her straight?

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.

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.

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.

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 🙄

I thought this too.

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.

@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.

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

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.

@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. 💐💐💐💐

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.

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 🌺