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.

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."

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.

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.

He is now 21 and very healthy.

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.

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.

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.

Do you think that your DM is helping your DS to appear less vulnerable to people? It may not be pretending. That calls for the operation of her mind, and no one can know what that is.

Your DS has to go through life with a disability which may or may not be obvious, but believe me, there is an art to appearing less vulnerable, and one which must be mastered, because life isn't easy and people take cruel advantage of someone who is disabled.

So long as the people near her know her limitations, and she has the right treatment from her GP and other medical people she needs to treat her, it is better not to appear vulnerable: for example, walking splints can be hidden by long skirts. She could - if she hasn't already - join SCOPE and learn about appearing not to be disabled.

It isn't easy. On the one hand, you need people not to expect too much of you, but on the other hand, when meeting new people you don't want them to see you first as disabled, and second only to your nature.

I'm going to be a bit blunt because this is somewhat triggering. My parents were told I needed an operation on my lower back when I was pre-teen - I was at the consultation with the surgeon and remember it well. They weren't keen, so took a "wait and see" option that they squeezed out of the reluctant specialist. But they didn't wait or see - they just bunged me painkillers. And I'm 50 and have taken codeine every day for decades. Truth was, judged against many other episodes, they just couldn't be arsed to have that disruption in their lives. They'd give anyone a load of old guff about not wanting to disrupt my schooling etc., but truth is that they could not be bothered with the disruption. I have tons of material to back this up and they managed to ensure I was landed eventually with three disabilities, not just the one. Oh yes, I know what that neglect can do.

I'm not bitter, though. I've worked all this out for myself (built my own narrative), but both my parents had shitty upbringings themselves, they were isolated, my mother had autism... They didn't go out of their way to be nasty on purpose. I have come to a sort of peace that is only disrupted when my father says something twattish from time to time. And then I spend a few months reminding myself that he's an emotional vacuum and then we totter on again.

The thing is, this unpicking took me years and years, and I wanted to do it - I was driven. I wanted to feel better about the neglect. The problem here is that in essence you're asking your mother to do this now and she doesn't even want to - I was fully invested in working out all this shite! She has her narrative and she's sticking to it.

Resultantly, I doubt you can change your mother's opinion. She'd have a whole deck of cards crash down around her ears to change her position. I very much doubt your mother even understands why she really made the choices she made, so you're pulling on a long thread there. Instead, I think you're just going to have to soldier on with your DSis. But you are there for her, which is absolutely marvellous. Many of us neglected kids are only-children because, guess what? Our parents had a go and realised pretty damn quick that they weren't cut out for the endeavour!!! Your sister has a wonderful gift - that's you - and between you she will feel validated. People who have never had a hidden disability won't understand, but having others validate that you aren't tickety boo is half the battle - that's when you can start to ask for what you need, have the confidence to do your own research, even tell people what you're going through. You might try Quora to learn more about the condition - I cannot guarantee the quality of content for her condition, but for all of mine it has been brilliant and I've learned some really important things on there from people around the world that the NHS does not know.

'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.'

Sorry but I am confused by the above? Firstly who was it that diagnosed her disability, the doctor maybe, and what 'medical support' has she 'always had'? 🙄
My confusion is how your DM could possibly totally ignore an official medical diagnosis and/or the consequential 'medical' support' whatever that might have been or still is?
It sounds not only an odd way for your DM to behave although maybe she saw it as some sort of failure on her part, but I can't imagine how it was even possible for her to do this indefinitely even though you have done your best to challenge her over it?
I suppose what makes it more difficult to understand is not having details of the actual disabilities but I do appreciate why you might not feel it appropriate to disclose this information. 😥

What your mother has done is abuse. Your poor sister and poor you. I really hope you have both got good counsellors.

OP your mother should feel guilt. It’s normal and natural to feel guilt when you have done something that’s very wrong.

What are the activities that your sister struggles with and how can they be adapted to enable her?

Attitudes depended on the disability, your cultural background and where you lived in the country.

So for example for some cultures being deaf was accepted so help at school was accepted but for others it wasn't Those who didn't accept then used the examples of poor treatment and practice to stop their child recieving the help they needed.

I know people of different ages including child who had/have a parent who played down their disability. The disabilities are a range.

Playing down means lying and misleading doctors, other healthcare practitioners, teachers and others who work for the child about their child's problems plus the help and adjustments that they need. This includes in the worse cases saying their child doesn't suffer from certain symptoms of their condition anymore then l cancelling appointments with particular specialities, and not giving prescribed medication.

One of my friends who works in healthcare told me years ago that she deliberately attempts to get children over 8 to speak for themselves and if she decides they are Gillick competent she will ask their parents/guardian to leave the room briefly. I've since found more practitioners if they can - so they have a nurse/student/other employee in the room - do this.

Your mum is probably never going to change. Best thing is to accept that. But your sister is absolutely entitled to the support she needs and to have her disability recognised and assessed for support - that is enshrined in law. Speak to your sister and see what she wants - its not up to your mum. Your sister is engigled to a local authority assessment under the care act 2014 regardless. That is the first step - contact the local authority for an needs assessment for care and support and support your sister to get this done. Best of luck.

Think this was very common. My cousin had learning disabilities and his parents never mentioned it. It was only when he very sadly died in midlife and his sister was talking about him that this was mentioned. Attitudes change OP. Your Mum probably thought she was doing the right thing.
Please do support your sister to get the counselling and support she needs X

I don’t have a neat answer but can tell you about a friend with severe disabilities whose parents were the same. She is really brave and intelligent and went to university, met her wonderful husband there and they are a delightful couple. With assistance from her husband and support workers, she gets out and lives life fully. Her parents still live a few miles away. Now that she is an adult, they cannot insist that she is not disabled but they do act like she only just became disabled, pretending that she was fine before. It’s really odd. I think they tell themselves that they are responsible for her «can do» spirit and pat themselves on the back for making her so strong.

I daren’t criticise others’ parenting too much as none of us is perfect. At the same time, I see the psychological damage a lifetime of being gaslit caused. There is a fine line between encouraging independence and flat out cruelty and her parents crossed it. While my friend somehow made it through and is thriving (albeit in frequent physical agony), it could have turned out very differently. Support from certain other family members and friends helped her survive and move away from what was an abusive situation. Your being there for your sister will make a huge difference, I’m certain.

Your DM neglected her child and now your DSis is suffering and not getting the help she's entitled to. Your priority should be to help your DSis and not worry whether your DM will approve or not.

Since you are not being specific about the disability it is very difficult to understand.

You can’t expect anyone to form a reasonable opinion without more info.

I knew a mother who was also a nurse and she was very tough on her child with a disability ( I believe it was CP)

she was NOT abusive. She simply didn’t want her child to be weak and deodenent. She didn’t want her child’s potential for growth and inference to be stifled by pity, mollycoddling.

Some may disagree but she was doing it out of love for hire child who she knew was capable and would be on her own after her mother was gone.

many people are never allowed to reach their full potential due to over protecting Molly coddling and helicopter parents

Just ignore your mum and get on with supporting your sister. The fact that she doesn’t live with her is all you need. Put your efforts into researching how to help your sister and encouraging your sister to accept help. There’s no need for your mum to know anything about it.

You and your sister need to think about the difference between equality and equity.

Equality 🟰 treating everyone the same
Equity 🟰 treating everyone in such a way that they can reach their potential.

Your sister achieving equity is not “making a fuss”, it’s living your best life.

And if your mum has something to say about that, shut her down straight away. “Not your decision anymore, Mum” and change the subject.

My sibling refuses to accept my parent has dementia. When she speaks to her on the phone she asks the same questions over and over. Medical people say she has dementia. Twice she has been in a dementia home once after hospital, another for respite. She still denies it 'she is dehydrated, she is tired, are they eating enough vegetables' etc.

They were the same when I had a condition. 'I don't think it is'. Even when I had an operation she said they had got it wrong.

I don't know if it is bloody mindeness, narcissism or that she is a comprehensive teacher of year 7's telling kids what to do all day long and 'she is always right'.

It is annoying and I feel your pain.

There's obviously a lot of denial going on there, and no doubt some underlying guilt that the mother herself has somehow caused it. Times were very different then, all the stigmas and lack of support and understanding and that feeling has carried on over the years. That can go either way - head in the sand or determination to do the best for her. My son was the first in our big family to be born with a disability. It took a lot of patient explanation, especially to my Mum who was so sad and afraid of the future for him. I know it's not quite the same as your situation but just that it can be a bombshell within a family.
I wish you both all the very best. She's very lucky to have you.

This.