Dd, autism and cake - Thread 2

[bendmeoverbackwards]

I had no idea that my first thread would fill up and I am in awe and overwhelmed at the amount of support.

I am going to re-read all the responses and make a plan. Thank you, this has been eye opening.

My younger sister got stuck/failed to launch for quite a few years as a young adult but she has now in her 50s got a successful marriage and two lovely nearly grown up children, a house she owns and while not exactly a career, she did eventually manage to get into work.

Thank you for sharing this @Phineyj May I ask what helped your sister? What did your parents do?

The thing is, the current approach isn't working, so fear of another approach not working — well, the failed approach isn't going to start working, but a new one might. This is cognitive bias in favour of inaction.

What comes through in your posts is how afraid you are of triggering her. You're avoiding suggestions that might provoke her even if they might lead to long term progress. You're afraid to do things like take "not keeping the bath clean" off the table as options.

As I say I am not a fan of tough love, the "cut her off and let her sink or swim" approach. But right now you're at the other extreme. Yes, you need to celebrate small wins, but there needs to be overall progress.

I'm sorry if this sounds harsh, but her current lifestyle is dreadful for her mental health. Why would you think that if you stopped enabling it you would be putting her at risk of suicide? Would it help to talk to a mental health professional about your fears? If anything, the only thing you mentioned that would raise any concerns in that regard is her watching TikTok videos that glamorise suicide. So surely your number one priority should be stopping her from scrolling TikTok all day and getting her to do something productive. Protective factors against suicide include having a sense of purpose, healthy relationships, and effective coping and problem solving skills. I don't see how she will ever develop any of those if you don't change your approach drastically. I think you said earlier in the thread that you feel your current relationship with her is very important for her and you don't want to risk damaging it, but from an outside perspective it seems deeply unhealthy.

Respectfully op surely low demand means some demands though? I'm no expert but I had always assumed when people used that term it meant picking your battles and letting natural consequences happen for the small stuff. Not having no expectations? I've mainly heard people use it reference to younger children though so call me out if I'm wrong. But I thought it was this kind of thing - you have to have the dinner cooked but it can be served with everything in a separate dish. You have to wear your uniform but we won't make you tuck your shirt in. You don't want to wear your shoes, fine you still have to go out but you'll get wet feet etc...

I'm sorry, I don't mean to make you feel even more confused.

I suppose if you hold on to nothing else then know that you can remain warm and supportive to her whilst insisting on your own personal boundaries to protect yourself - and your other dc.

After 2.5 years of no progress, I totally understand that you feel you have to try something else. I suppose you could try the things others have suggested, and if she does regress, then at least you'll know she needs something else. I suppose the question is though, how long do you give it?

Oh, that is an interesting question.

It was not until I had my own daughter (diagnosed AuDHD at 7) that a lot of things made sense. I realised my sister almost certainly has some kind of additional needs. I have brought it up with my mum a few times in the context of "Gosh, bringing up X is really really hard; I know it was hard for you bringing up Y - what helped?" And she has been quite dismissive "oh, no-one talked about those things in the 70s/there was no help/what's the point in "labels".

What did help that she and my dad did in my opinion.

1. Not making a big fuss about differences. She would only eat bread and jam for 6 months or so. They gave her bread and jam. As an adult her diet eventually became totally normal.
2. Not fussing that her friendships snd hobbies were very limited but encouraging those that she had.
3. Having high expectations for her. My mum mentioned to me as an adult that my dad had doubted the academic school they sent me to was right for her. My mum advocated strongly that she must have the same chance. But she also took her round alternative sixth forms and colleges later when she expressed doubts about A-level.
4. They set her up in a flat when she left university (my dad even decorated it). (I know not everyone can go round buying flats).
5. They were always scrupulously fair between the two of us with time, money, childcare etc.

Where I think they did go wrong was not talking about or acknowledging that she had difficulties much in excess of the average. Denial is never helpful and it meant that I had to be very independent from a young age (by the age of about 30 I realised it was utterly pointless my ever disclosing any kind of worry or problem to any of them as I was supposed to

them!)

They had to support her and her children

Sorry, the app on Android cut me off!

Briefly, I'm not close to my birth family because my sister took up all the capacity. I've sought out that support from others. I'm quite drawn to people around my parents' age who have more emotional intelligence and more interest in me as a person.

They had to support my sister financially well into adulthood (they could afford to, but still). I think they could have had higher expectations of her earning a living and someone should have given her (and her husband actually) years ago, a talking to about not being so dependent on other people. She should have had some therapy so she could understand herself better.

Managing my parents' old age is going to fall to me because my sister is very dependent emotionally on my mum and won't be able to take tough decisions (my dad had a brush with death 6 years ago and Dsis was about as useful as a chocolate teapot).

I hope there is something vaguely useful in a that!

I think it's as much about reframing the demand language and breaking really big expectations down into a more manageable series of them. But yes, it doesn't mean no demands, it means they sound and feel quite different. At least initially, until capacity builds/ rebuilds and ability to tolerate more structure returns (assuming they've been capable of tolerating this in the past, but have lost the skills - this has been my assumption with op's dd). I also use 'red lines' with dd: "Dd, this is my absolute red line. You have yours, I have mine. If they're incompatible then something else needs to happen to reach the same goal". Admittedly she's much younger though, and at her worst then the mere conversation would have tipped her over.

Yes to picking battles and natural consequences (you shout, or manipulate, I walk away/ don't respond).

Incidentally, that last one you suggest about shoes reminds me of dd when she was 6. She wouldn't have cared about wet feet in the moment, she'd have walked barefoot risking cuts instead but crying ams screaming the whole time due to being watched by others because it wasn't that she didn't want to wear shoes, it was that she was unable to in that moment (really hard to explain the level of nervous system response to sensory/ control issues like that but it's literally like a 'switch' being flicked - no longer any ability to access reasoning). Admittedly, she was mucn younger which also played a part, and we also lacked understanding at the time. It still occasionally happens, but she's usually able to work with us and find a temporary solution, as long as we catch the reaction early enough.

It sounds really difficult to navigate for you and her. You have my absolute respect for finding a way to make life work for your daughter. Hopefully it continues to improve for you.

OP on TikTok bear in mind it is very easy to have 2 or more TikTok account and you can switch instantly between them. But even if you don’t the algorithm can perfectly well cope with feeding you all of puppies, make up and suicide ideation because of mean parents - it doesn’t all have to fit a single narrative.

I’ve obviously not read the Facebook PDA pages. But as an observation from a variety of other specialist groups, it is very easy for group think to seem to prevail on matters big and small. If you have alternative views to the vocal in the group (often the admins) and express them you often get criticised, told that you are wrong, and so of course people just stop posting which makes sites an echo chamber of those who share specific views. Now that doesn’t mean that what they are advocating hasn’t necessarily worked for them - and that’s worth bearing in mind - but I’d be circumspect on determining vigorous agreement between members of a Facebook group means their way is the only way.

They were always scrupulously fair between the two of us with time, money, childcare etc.

@Phineyj Im a bit confused because you say this then in your second post you said your sister took up all your parents time hence you’re not close to them…?

100%, and often over time the thinking of these groups becomes more extreme. Even on the PDA charity website shared earlier, it was talking about the human rights of the children, with the unspoken assumption that if you don't do what your child wants at all times you are infringing in their human rights. This echoes what I have found on mumsnet even, that reasonable criticism or alternative views, i.e that 'burnout' does not last for years, invokes a very angry response, often with someone saying that a no demand approach to their child's burnout has completely worked, even though they are still locked in their room with a screen years on....

The implication being that no other approach other than completely letting the child do what they want at all times is in contravention to the UN charter on human rights 🤯

On reflection I’m going to double down and say groups can become quite cult like particularly when parenting can be involved.

I’ll give you a minor non parenting example. I don’t use FB that much but I am still in a group of retailer that sells online and social media as it had some useful info. I buy quite a bit from there and broadly I like what I get. But goodness me, the comments - not from the business but the core group members who view themselves as self appointed enforcers - if anyone says anything that isn’t unreservedly fawning are something else and I think driven partly by parasocial relations with the seller selling largely via lives. So why would I give my genuine opinion that x was smaller than I expected or Y didn’t last well? I don’t need that shit in my life.

I don't get that from that quote personally.

One of the hard truths of living with a child with PDA is that you will get on much better if you do aim to treat them as someone with autonomy (within boundaries of keeping them safe, not impinging too much on others, the person paying the bills ultimately getting the final say on what the money goes on etc).

It's not how my parents brought me up, for sure. But as I said in a previous post, I'm not close to them and that's in part because they rarely listened to/listen to me.

My sister told me when her kids were young that she would be paying close attention to what they said, so it's not like it was just me either.

I've always found the PDA Society info sheets practical and helpful but I'm not really aware of their campaigning or political stance, if they have one.

It probably does seem a bit radical in our world of academy trusts, fines for absence, mad focus on teens wearing polyester blazers and GCSEs at all costs system to even mention "the rights of the child"!

To clarify, in terms of helping us practically and financially (so on paper) they were scrupulously fair.

But she spent her twenties and thirties lurching from one crisis to another so they had no headspace for me or any difficulties I might be having. To the point that I didn't/don't tell then anything.

Does that make sense?

I was thinking about your older two. If they have kids later it might stir up some stuff for them. You may be surprised.

But it implies that all other appoachs are not in keeping with the UN convention on human rights. I mean, why even mention it let alone go into a lengthy post about it, it's completely batshit!

Adults make choices for children in their best interests, such as not letting them only have icecream for dinner. That isn't infringing on their human rights to make choices for themselves, is it?

All I can say is @Terfymcnamechange (I like your username by the way!) is that when you bring up a child like mine you're not worrying about ice cream because you've got your mind fully on heading off school refusal, random violence, eating disorders and a bunch of other risks.

Some kids could start an argument in an empty room.

Sometimes you have to overlook the ice cream.

Agree, and often wonder when some go on intensely re one persons human rights and how these must always be stringently followed, do the accept that others also have human rights and aren’t just support humans or bit players in their life where they are the centre of the universe and they must always be the only priority?

Another example would be: no one should be forced to have injections or invasive medical treatments they don't want under the Human Rights Convention (reasonable). So how does holding down a preschooler to have their immunisations fit into that? Is it against their human rights to make them have it in their best interests? Of course it isn't.

An aproach to a school refusing of PdA child needs nuance and an approach based on evidence and a balance of benefits and risks and harms. That's why people get in a tangle, they follow a fixed rule thought up by someone on SM: 'They can't cope with demands so I can't expect them to do anything' which causes problems.

I do agree with that, and sometimes my kids have just had icecream for dinner 😂 But that's based on my judgement on the day, and if on another day I say no, you meed to eat another dinner I'm not violating their human rights

I'd agree with the second paragraph. Managing a child with extreme demand avoidance is exhausting, so I do think many parents end up falling into the trap of becoming totally permissive after they've become so worn down. Nuance also requires hyper vigilence to spot the tiny windows of progress/ increased capacity and know when to push a little, and when to pull back. Often there are lots of false starts, tiny progress is celebrated too much/ too early, or setbacks feel like the world is ending. It can feel very inconsistent (like the waves of small progress and setbacks I mentioned earlier before sustained and meaningful progress takes place).

@bendmeoverbackwards can I point out that your daughter has not been diagnosed as having PDA and from what you have posted, unlike @Whatafustercluck ’s daughter, had no particular challenges until around 10/11 when you suspected (rightly) autism.

Whilst I respect Whatsfuster’s challenges and can see how she’s having success, her daughter is much much younger and appears to have had lifelong issues - again I don’t think you said this about DD3. So this is irrelevant to you.

I don’t think her experiences have anything to offer except (and I say this gently) her approach would justify your family’s lack of action for the last 2 and a half years. How reassuring! You’ve been right all along - just hold the faith and it will all come good.

And maybe, maybe this might be true - who can tell?

And this is why you are as stuck as your daughter because you want to have been right.

But what you actually need is something to change.

(can you recognise how alike you and DD3 are?!)

You need to do something different. You’ve already made a start. I hope you feel able to push on.

Thank you @Phineyj I am very aware of the effect on dd1 and dd2. And whilst I can’t pretend that it hasn’t affected them, I think and hope I have mitigated it as much as possible. Dh and I are fully involved and present in the lives of the older 2, we always her time if they want to talk or need support. Dd2 is very expressive and often says how grateful she is for us as parents. I’m not saying it’s all roses and there have definitely been times when they quite rigjhtly feel sidelined. And I can’t turn the clock back but I can listen to them, acknowledge and apologise.

Dd2 is away travelling at the moment, I think she will be pleased to hear the new approach with dd3 when she gets home.

The OP's daughter is well beyond the age that anyone can make her do anything though.

No-one would think it appropriate to force a 19 year old to have a vaccination or to ban them eating ice cream for dinner.

Would they?