Am I expecting too much from ND pre-teen?

[HippyKayYay]

Parents of ND pre-teens how do you know where to draw the line between supporting them and pandering to them?

We do a lot to support DD (12, high functioning ASD and ADHD) in the mornings and at bedtime (two toughest times of day for her). But I'm feeling totally burnt out by it and that I will never be able to meet her incredibly high standards and unrealistic expectations about what we can and should be able to do for her. If we try to draw lines (e.g. if you want a lift to school you must be ready to leave at X time, so that we can get on with our day') it leads to huge conflict, accusations of us 'being mean', or 'why can't you just be nice to me?'.

Bedtime is a long, protracted affair that requires me and/or DH to push her through the various stages of her routine (otherwise she gets 'stuck') but being careful not to nag her (because then she explodes). Her bedtime is getting later and later, but she still 'needs' us there at lights out to sit with her. Suggestions that we no longer do so lead to major distress.

I've explained to her umpteen times that we can't give her what we don't have, that we have limited capacity, etc. She gets upset because she says I'm 'making her feel bad'. We go round in circles. Any attempts to draw hard cut-offs at bedtime can lead to massive melt-downs (often lasting until after midnight - we've had 3 in the last week). DH and I are knackered and have no time together at all in the evenings anymore. Added issue is she has a younger brother who gets very stressed out by all of this (expecially when he's woken up by her having a meltdown at 11pm).

So, yeah. TLDR: how do I put some boundaries in place around what support we give DD without making her 'feel bad', that we 'don't love her' and without leaving her really distressed? Because I'm becoming massively resentful about meeting her 'needs' (/demands), which are feeling increasingly unreasonable.

That’s pretty much what I meant as well although I didn’t explain it so well. If she kicks off, she kicks off. I assume she responds to instructions at school without having to do a specific routine or ordering her teachers around so they do what she wants them to do (which is in essence what she is doing to you). She maybe ND but she needs to live in the real world not have every single person treading on eggshells around her.
I agree with the other poster who said tell her that it’s bedtime at 9.45 or whatever time you want then leave. Think of it as controlled crying in a baby, yes she will kick off and be distressed but she is safe in a loving home, no harm is going to come to her by going to bed. I get that she is anxious but you are feeding into her anxiety by staying with her by showing her that you need to be with her to stop her being anxious.

At 12, she is old enough and high functioning enough to understand the reasons why you are doing it. If something doesn’t change then you are still going to be doing this in 4 years time when she is doing her GCSE’s. I do understand that you would do anything to keep her happy (trust me there are things I do with DS which would shock my friends) but this is having a huge impact on your family and I suspect it’s also not particularly beneficial for your DD as it’s only going to get more extreme.

You need to read up about PDA.

It's hard. Both of mine need this level of support at bedtime and getting ready in the morning and it is exhausting. But they need what they need. You need to find ways to meet the needs without burning out yourself.
I recommend a Facebook group called Gentle Parenting Autistic/ADHd/PDA Children UK and beyond where you'll get lots of helpful advice from parents who've been there, and from autistic people as well.

She may be anxious but you can set your expectations and let her know how hard you know it is for her, and how much you sympathise, and brainstorm ideas with her which she can contribute to, but let her know the bottom line, and thatbthis isn't negotiable.

You decide the bottom line, which might be incremental shifts from her current demands.

It will be hard for her but likelihood is that she will cope.

I bent over backwards with my PDA daughter. She never did any chores for example. None. Her food issues were extreme and I accepted them. So I'm not about forcing asd kids into everything society thinks they should do. But for me there were limits to how far she could rule the family routines. And I found that if I showed tolerance in areas like food, chores etc, she understood that there were some non negotiable issues, where if I was unwilling to shift, she grudgingly went along with it.

So I gave her 90% of what she wanted, and she had to give me 10% if that makes sense.

I do understand how hard it is - but really she will cope with being slightly challenged.

My biggest ever issue with my daughter was her bedroom. She wouldn't let anyone in and it was a right mess. She went on a school residential trip and I spent the whole week clearing it out. I got my husband to pick her up take her to a cafe and tell her what I had done, while I took my other daughter out for a few hours. She responded exactly as we expected. When she got home she practically wrecked the room in her fury. It was extreme. But still I did the right thing and she knew it. She talks about this incident a lot btw. It was stressful for her but it made her feel safe that I wasnt scared of her, that I didnt back off because at one level she knew the room needed fixing.

Im trying to suggest you find that spot, where she kicks off at your demands, but you are able to cope with her reaction and she copes in the end.

I build negotiation time in. I tell DD 10 minutes, knowing perfectly well I'm aactually fine with her reading for 15. Then after 5 monutes, I give her a five minute warning. At 10 minutes, I tell her time's up. she asks for more. I agree 2 more. Maybe one more time. Then done.

Used to do similar with DS.

I was going to ask why the specific bed time - and could you be flexible on that? But is it because she's needing you there? DD is my NT child but this anxiety about being anxious is something I recognise. For some reason, she really struggles if I am a sleep BEFORE her. So I've had to insist she has to stick to bed times becuase if we're up late, then I can't stay awake.

I would also suggest ADHD Dude on this.
He's in a podcast with another ADHD therapist (ADHD Guys) and there was a recent one about bedtimes (I think it was a listener questions or a coaching session one - but they are mainly pretty good so just have a listen to a few).

Just coming back on to add a couple of things. You and your husband need to make some time for you, get a trusted relative or friend to come and stay while you, if finances permit, book a weekend or just one night away just the two of you. doesn’t have to be somewhere amazing, just somewhere that’s not your house. You might feel that your DD’s difficulties mean this is not possible but just do it. We were lucky in having some very clued up no nonsense family members who were able to do this for us and it worked wonders. First it gives you both a break and time together to just get some distance and objectivity and hopefully enjoy yourselves!. Secondly it will give your DD a break from you and I mean this in the nicest possible way she will be benefit from this. When we did this we deliberately didn’t leave many instructions regarding routine either. Sometimes letting go of the what if’s and allowing what will be will be is best!
Finally and I say this as you mention you are feeling burnt out, book yourself onto a course for you- not necessarily a parenting course but perhaps something like NLP or CBT that will help you look at your beliefs and see how you can do things differently, it’s usually more practical to look at how you can change your own behaviour.
You are in the trenches and it’s hard but you are already doing a bloody good job, let yourself know that! Sending solidarity and strength!

I have. I don't think she meets the profile beyond traits that are anyway part of ADHD or Autism

Yeah, I mean we do this too. There is no other way to do it (other than physically grabbing a book out of her hand, which I obvs wouldn't do). But it's the constant navigating and negotating that's burnt me out

Yes it's because she needs us there. I genuinely don't mind her light going out late if she can get up and function the next day. It's that we need to be there when it goes off. And that means agreeing a time beforehand (so we can return to turn her light out).

An ideal middle ground would be that she comes and gets us when she wants her light out. But there was a hard 'no' from her to that suggestion (because the getting-in-to-bed rituals that have already been done and can't be re-done)

Yup, I know. Breaks are hard for lots of reasons, but we do occassionally get them. I don't really feel they help that much though. I'm in (very good) therapy. Thank god, as that's the main thing that helps me keep going.

So sorry you are going through this. Your DD sounds very much like our DD who is now 14. She has an ASD diagnosis and I would say she is high functioning but definitely hard work at home.
re your DD shouting and waking your son up. Stamp this out now. Make it clear that it is absolutely unacceptable. We have a saying that ASD is a reason for her behaviour but not an excuse to be mean to other people. Interrupting your son’s sleep is absolutely not ok. Be very firm here.
on her bed room routine - I would low demand it. What is happening isn’t working for you. So don’t try and move her through - just check she has done her teeth and then leave her to it. She clearly needs less sleep or space than you

I think you need to simplify things right back.

Be straightforward (but do not bend). ‘I’m really tired on an evening. I’m not spending my evening doing this dance with you. I’m going to come in and say goodnight when I’m going to settle down for the evening. You don’t have to turn your light off then, and if you want to keep it on all night, that’s fine. But once I say goodnight, that’s it and you need to leave me to sleep’.

I would suggest actually (pretending to) go to sleep the first few nights while she adjusts her mindset.

She may need a lot less sleep than you. Does it matter if her light stays on?

She will probably counter with she NEEDS to turn off the light but she NEEDS you to do that etc etc. You just need to keep reaffirming the same message without compromise. ‘If you want me to pop the light off when I come to say goodnight, that’s fine, but it’ll be at the time I decide, not the time you decide’. And no further discussion on it.

She has control of light on/light off, getting into bed/not getting into bed but she doesn’t have control of you and your evening.

With regard to mornings - does she care about being late/getting into trouble at school? If so, let her be late and let her face the consequence at school rather than that being another home battle (we always did this with homework too and it was effective). Then again, she has the choice for herself - she’s on time, or she’s not on time. But you step away from the micro management of making sure she’s on time. If she wants a lift, does it actually matter what time? If it doesn’t impact on your work, are you just fighting a battle for the sake of it? Could you try just relaxing on the morning, leaving her to it (within reason) to take the pressure off and seeing how that goes? Obviously none of this advice works if she doesn’t want to go to school and doesn’t care whether she gets in trouble or not!

Thank you...

So, yes, I agree that the shouting at 11pm shouldn't be 'allowed' to happen. We tell her this at the time. It just makes her shout louder/ lose it more. What are we to do? I can physically force her e.g. downstairs, to get her away from DS's bedroom, which I have done in the past. But by that point DS is woken up and distressed, and physically forcing DD means she becomes hysterical (literally). I can't actually stop her from shouting once she starts. Obviously we need to prevent it from happening at all, but that is very much easier said than done.

I guess that's my bigger question. We have set 'boundaries' (e.g. no shouting and waking up your brother) but there's no way to enforce it, once things are going down that road. Is there? I mean, am I just being totally soft? Or stupid?

How is your ds dealing with all of this? How old is he? Does dd's bedtime and morning demands mean he doesnt/hasn't ever had attention support at these times?

When my daughter was much younger (no sen) she was the most awful sleeper. In desperation we hired a sleep therapist and after observing us she said 'you have created the monster'. Essentially we had been manipulated by her into the most ridiculous behaviour to appease her, and a lot of her upset and crying when we didn't meet her expectations was anger-based rather than distress. I know that your DD has sen so the situation is more complex, but in some ways have you also created the monster? She sounds really manipulative 'why can't you be nice to me' and 'you're putting too much pressure on me' sounds like she understands and weaponises your love for her, your uncertainty around how to parent her, and your sensitivity to her autism and ADHD. She sounds like she has quite a sophisticated understanding of how to get you to do exactly what she wants. I wonder if you have your DS go away for a week and that week you are much more firm with boundaries and pay no heed to 11.30pm shouting, and see what happens when she realises she can't manipulate you to respond to her every whim. She knows she is loved by you, she must as you've been very loving all her life, so I don't think putting in some boundaries would affect that sense of security. Without it can you and husband really carry on as you are for many more years? And what happens to her ability to form relationships in the future if she has never been taught that you can't control the other person to deliver your every desire? I am sorry it's so tough. You sound amazingly kind, resilient and thoughtful.

Ok, yes, thanks.

So mornings - I guess we could just get her to tell us when she's ready and we go then. But it means DH and/or I are hanging around to start our work day. Yes, we can crack on before we give the lift. But it's disruptive. And also, frankly, annoying. I also think that there need to be some boundaries around that. I really do feel that if she wants a lift it should be on our terms (we are doing the favour).

Bedtimes - I have tried absolutely everything you've said. Well, I've tried saying it, not doing it. Cos saying it leads to her getting super upset, arguing with us, accusing us of being mean, etc. And then it feels like a petty battle of what I want vs. what she's want. And then I think 'well, she clearly still needs support. She is struggling. If I can give her this thing to make her more regulated and support her rather than denying it for the sake of it, why wouldn't I?'

I guess the answer to that last question is: because I'm burnt out, and I just can't anymore. But I'm not sure how to communicate that to her without freaking her out (she gets stressed out if I say I'm tired, for gods' sake, because it makes her worry I'm ill or going to die, or just reminds her that I will one day die).

Yeah, not well. Basically the pattern is that after one of her big explosions he will often be angry/grumpy and/or anxious for the days/ weeks after. He had some big anxiety issues earlier in the year. Some school refusal. We supported him through all that, obvs.

But, when DD is melting down, one of us will be with him, sitting with him, reassuring him, often putting ear plugs in, etc. Sometimes him and whoever is with him will retreat to another part of the house if it's really bad (e.g. put him in our bed with one of us while the other deals with DD)

You may find this useful. It's in south West London but it does say you can live elsewhere. This is by far and away the best resource I know of for parents of autistic girls https://www.skylarks.charity/activity/562/online-girls-connect-for-parentcarers-of-girls-with-autism-november-2023-salima-mithani

Thanks. Yeah, we probably have created the monster....

I actually like the idea of DS going away and getting him out of the picture for a bit. However, there isn't anywhere he can go for long enough to make a difference. He could do a sleepover with a friend for a night, but not a week. He won't go to GP on his own (only with DD, ironically). Also, tbh, if he was away for a week it would mean it was the holidays and she's pretty much fine in the holidays. But I'll have a think about that. I'm wondering if we could have him sleep in the downstairs guestroom for a bit. He probably wouldn't be keen on it, but we might be able to persuade him.

I'm really not that kind or resiliant. I shout. I cry. I say things I regret. I do repair with her after, though. But still, it's not great. I really don't think she's being manipulative (on purpose). She's just trying to get her unmet (and to herself, unidentified) needs met. And if I try to suggest meeting them in other ways, she just says things like 'but I don't want to do X then, it doesn't work if we do it then, it has to be at bedtime'. She's actually incredibly sweet and caring and thoughtful most of the time. But when she's not it's the complete opposite. It's quite Jekyll and Hyde really...

OP I can tell you’re trying really hard and I feel for you! My son has ADHD and likely ASD also awaiting assessment, he is 18 now and I do recognise quite a lot of his behaviour in your description of the issues. He was diagnosed fairly late on and I am better informed these days but we did manage to find some things that helped through sheer effort, trial and error!

For one thing I just wanted to encourage you that although my son is not on medication (long story but he has a potential cardiac issue he needs cleared for before it could be considered), he has improved SIGNIFICANTLY since this sort of age when I think it was really at its peak, as he has matured. The transition/time-blindness thing and the “just 5 more minutes” and the needing reminding and negotiating about absolutely every step of anything that needs doing every day even down to brushing teeth was very wearing but it really has improved markedly with time. He still finds it difficult but has found ways to adapt over time as have I, and has also gained the maturity and experience to be able to truly understand that if he doesn’t eg stop watching YouTube now he really won’t have any time to draw etc etc. because time is not infinite - it’s like he is suddenly better able to understand the laws of space and time 🤣So don’t despair!

“Alexa” reminders have helped us quite a bit here in that I am no longer “the bad guy” saying time is up for an activity but it is coming from a neutral party. He is now at the stage where he is setting his own reminders to keep him on task even for non daily routine stuff when he has certain things he wants/needs to achieve. Before we started using Alexa it was all on me and I found it hard to get anything done myself as I was having to keep up with reminders for him about what he was supposed to be doing every five minutes (and I have a bit of time blindness and may well in fact have ADHD myself so as a single parent it felt really overwhelming to try to keep myself on track as well as him!). So that really helped.

Before we used Alexa I had already got to the place of really picking my battles and not sweating the small stuff. Also totally abandoning ship on any semblance of a normal bedtime that resembled other people’s children at that age, or indeed the idea that he would be going to sleep before I do etc. and just leaving him to it and accepting he probably won’t sleep til after midnight. With the agreement between us being an absolute non negotiable rule not up for any sort of discussion that if he was tired in the morning for school because of sleeping late then tough luck he still has to get up and go regardless of when he goes to sleep. (We did also have this issue about fear of death at nighttime and having to sit with him until he fell asleep for many years, which was super super draining all by itself, especially before he started melatonin which made a huge difference to him - I agree taking it earlier might be helpful for you. I eventually solved it by slowly slowly over much time and with consent moving my chair gradually closer and closer to the door of his room, to outside his room to down the stairs while he fell asleep! But it’s not been an issue since).

The other thing that was really helpful for us was, and probably my top tip was for me to set boundaries on what needs to be done eg an hour needs to be spent on homework, he has to have a wash, he has to load the dishwasher etc, but allow him to be in total control of exactly when he does these things. He tends to wash at night rather than in the morning which I would prefer him to do and he has now finished school but never managed to come home from school and get stuck into homework at an early stage of the afternoon/evening which I would also have preferred for my own stress levels about worrying it won’t get done! But I had to relax about some of that stuff and just mandate what non negotiable has to happen today sometime before bed, and let him be in control of exactly when it happens. Due to the time blindness issue this didn’t work at first because he would forget/lose track and it would end up being more than past a reasonable bedtime with nothing done. But over time we realised it DID work for me to suggest a time for an activity he needs to do, for him to consider if that would work in theory or come up with a counterproposed intended start time, and set an alarm/Alexa reminder for it. That would then remind him that this tasks existed, and he could make the decision to do it then or set a new intended time but needs to stop and give it a minute’s thought right now (I had to remind him to do this at first or he would just snooze it without thinking it all through to get back to whatever he was doing, but over time he was able to reliably reset an intention for a new time or alarm himself if needed, or just get on with it then and there as originally planned. He still often chooses to put it off til later so usually sets a fairly early initial intention start time! Easier on weekends/holidays of course as there is more time at home to play with. BUT it DOES get done and he doesn’t feel I am “nagging” him about it which used to lead to so much conflict (even though the constant need to “nag” or “remind” was wearing me out and I didn’t want to be doing it!) as he knows I can trust him to actually do it at some stage of the day which is all that matters for most things.

I see one of the issues for her is once her bedtime routine things are done she feels she can’t get out of bed to come and get you to turn the lights off as that will “undo” the routine kind of thing? I really recommend an Alexa for her in her room and one for you downstairs and then she can “drop in” or “make an announcement” to say she’s ready for you to come up now! I resisted Alexa for so long but after speaking to a co-worker with ADHD about how he manages his routines, I was encouraged to try it and it really has helped here.

Kindly, this is not about you. The situation is difficult and causing you to act in ways that you don’t like and make you feel bad about yourself despite trying to be the best parent. But you’re trying to be the best parent to an abstract child rather than the one in front of you. The one in front of you is struggling to cope and communicating this to you in the only way she knows. Maybe you can help her cope with meds, or more support at school. Maybe she does need to be taken out of school. If there is no additional support but just an increase in demand she is very likely to burn out.

Anticipating problems and heading them off at the pass is always a judgement call -,what if I’m exaggerating and it’s just a phase that I can overcome with the right tactics? Beware the sunk cost fallacy that blinds you to reality.

Take a step back, remove yourself emotionally, and try to look objectively at what your child needs to be able to thrive.

Also I just wanted to say that you know you’re not “being mean” deep down, but it seems like you’re lacking a bit of confidence in your parenting decisions over this which I can totally understand! But just let that sort of thing wash over you the same way you would ignore an overtired unreasonable toddler I would suggest! You’re clearly trying very hard to do your best for her as parents so be confident in that.

In your shoes I would start by suggesting she sets intentions as above for afternoon/evening activities that need doing or that she wants to achieve herself like the drawing or reading and help her to navigate through that process until she feels able to handle it herself and you can relax and hand the responsibility of making sure these things get done over to her. It really helps! And then try to tackle the actual having to sit with her at lights out issue by moving the chair incrementally.

I’d let the having to be ready at a certain time slide a bit for now on the other end of things in the mornings while you work on evenings being less stressful, especially if we’re talking about being 10 or 15 minutes later than ideal rather than 3-4 hours etc. It’s particularly difficult if you work from home I think to get that routine to stick. As a working single parent with no option in my role to work from home where I have always had to leave before him in the mornings, fortunately he has just had to suck up the morning routine and be self-sufficient or he misses the bus and is late!

I really don't agree. Not because I'm being defensive. But it's from trying to parent her, specifically, that I'm burnt out. Or maybe it's just that I don't know how to parent her, because what we're doing isn't working. But I literally do not have any more to give. Even if it was the 'right' thing to do, I cannot completely give my life over to her and her needs.

What I mean is, it is in part about me. Because it is me (and DH, obvs) who has to parent her. But if I'm burnt out I can't meet her needs. But meeting her needs burns me out (and they're also unmeetable, it seems). So what the fuck do I do??