Am I expecting too much from ND pre-teen?

@HippyKayYay the OT route is worth a try and it seems other PPs have had positive results. I didn't get DS1 OT assessed because I didn't see the sensory issues it was only with DS2 that I went because he had obvious sensory issues. The more I learned the more I realised the tricks we missed, there were stimming behaviours I didn't even recognise.

I don't know if you are familiar with 'zones of regulation' but this approach really helped my kids. It's about staying in the green zone, a happy relaxed state and identifying when they move into 'yellow' so they learn to use strategies to move back to green. Beyond yellow is red which is meltdown. It helps them identify their own triggers and manage them.

Sensory Integration OT was one of the best things we did. I didn’t really think my child had too many sensory things going on (also no obvs stims etc) but it wasn’t just about identifying stressors - it also helped identify sensory activity that was positive for them and helped them calm down. And calming down led to a nicer life for us all.

My PDA child really responds to low demands and input into decision making/high levels of control. But we talk about that not meaning control over our lives but it’s not easy at all. Even if you feel your child isn’t PDA the tools might still be worth a chance. And worth knowing that a lot of the standard advice/approaches for ND kids are counterproductive for PDA kids - countdowns and timers just add more stress and make things far worse for us.

There’s so much advice on here that it must be really overwhelming so I’m nervous of adding more, but have you tried the collaborative problem solving technique? The book “The Explosive Child” talks about how to make this work in practice. In your case, I think that probably looks like finding a time (when she’s calm and specifically not at bedtime) to set out the problem at hand (that the current bedtime situation doesn’t work for you because you need to do x, y and z instead of sitting with her) and ask your child to consider how you can solve the problem together. Not necessarily immediately either - give them lots of time to mull over. The book explains it far better than I’m doing sorry.

Mine is audhd and difficult too at bedtime. But aoso for any homework or schoolwork so mine is likely pda

Mornings got a little better at secondary but because she had to get to the bus for a particular time
We do
725wake her
I go down get her breakfast
She eats and i do her hair
About 7.30 she does toilet and teeth
Then gets dressed
Then on sofa puts her socks on
Shoes, coat or jumper
Grabs her phone and bag

Leaves
Takes 30 mins

Note there is only us 2 around so no distractions and no tv on. If sibking has woken up its very tricky

But main issues are at bedtime i agree its likely anxiety about school

We do
Snack or milk around 8:30
9.30 tell Bed time
Ignores us for 10-30 mins.

9.40 sort her bag -- gets stuck can take 20mins
Can also in last few months end up lying on floor in lounge or hallway
We brush her hair Hair,
toilet
teeth
Pj
10.10 lights out

It takes 2 of us for 2 kids as as soon as they are together they are distracting everyone
Dp is relatively useless as he gets obsessed with sorting hair no matter how late it is.
He thinks he is doing things but dd just moves out of the room and lies down elsewhere...

Your dd does sound manipulative (mine is).
And is likely waking sibling on purpose.

But
Weve come a long way in 12m in some things mine now walks to and from the bus in y8 after a whole y7 i had to walk her. In y6 i was having to dress her.

It is incredibly hard especially with other kids too as you cant always be strict even if you want to.

We had our daughter assessed by an OT and a Speech and language therapist for an ehc application (allowed psych - school thought she was fine, while simultaneously complaining about her all the time).

I was sceptical but we were advised to do it.

The speech and language report was astonishing. She had a clinical disorder and we had no idea.

The OT report was unbelievable. She was swimming but we could barely see it. She had so many strategies to mask her problems.

It is worth doing if you can I think.

I get where you are coming from. We have similar & similar age.

Some things that help in general-

Dedicated 1:1 time with Mum and Dad led by child (weekends) helps with connection and regulation

Timers (limited help)

Accepting that I have to do things like get PJs, brush teeth, pack school bag etc that others are probably doing independently now (for now at least)

Taking away lengthy routine in the evening. If he’s not tired or playing up at usual bedtime, he just sits with us and watches TV, this way we can at least sit and rest or potter about doing what we need to.
We have a time limit on this, if it gets to 10pm we go up, do teeth, get into bed and then sit with him whilst he goes to sleep. This is not ideal, but it means we at least get an element of an evening even if it’s with our side kick in tow.

For things like leaving the house on time we have started using rewards. Literally a reward chart on the fridge. He picks the prize. This was recommended by the consultant. People with ADHD particularly seek dopamine. We have had the most success with this recently.
For mornings, we have things like get dressed, have a shower etc. These have to be done within two asks and if not he doesn’t achieve the star. They might feel too old for this but I’m assured it’s a well used technique for all ages, & honestly it works for us 80% of the time.
So if he achieves 8/10 stars a day he gets 20p (his choice) (this is in addition to his pocket money) and when he gets to 150 stars he can pick a big treat or a day out.

Weekends or evenings, take it in turns with husband to go out by myself or he takes the kids out for a couple of hours to allow me to rest, sleep, potter, be on my own. Essential for survival!

Good luck. It’s not easy and it is exhausting!

I agree, a sensory diet worked wonders for mine. It's about doing sensory things throughout the day to enter the difficult period of the day in a state of better regulation so melt downs are less likely.

I'd highly recommend getting a private OT assessment if you haven't already done so. They will put together a plan. Sometimes little things like wall pushes between tooth brushing and PJ changing or a weighted blanket at reading time could have a big impact in regulation. Every child is very different so that's why an individual plan is very important.

You are clearly exhausted and I really feel for you. I do think you need to sit her down (once you and your DH are aligned ) and say you can’t carry on like this. She can’t call you names and impact on others in the way she does. No ifs, no buts. I don’t find penalties work with ASD children

I would honestly ask yourself what the worse would happen if she was just left in her room to put herself to bed when she wants. And not hassle her through

I agree with PPs, she doesn't sound high functioning, in fact I would say she has high needs. I have two with autism, one is AuAdhd the other Aspergers and your story seems like life is much more difficult at that age than it is for me, my DS2 is 12. I don't have words of wisdom but I'm wondering what if you just ignore her? Chat beforehand that you will no longer be involved in her bedtime routine and then follow it through. Is she capable of getting herself ready at all? I wonder if she had a visual prompt list or a tick list could she manage without any input? My DS1 was very volatile at that age but thankfully very independent so I don't relate to your situation specifically. I do however relate to learning to display patience and show no emotion to keep everyone calm. It leads to such a build up of stress. For years I had a permanent knot in my tummy and would wonder if i would implode. Everyone else (including ND DH) got to shout and cry or whatever but i became completely controlled and suppressed. It led me to becoming very withdrawn and disconnected because too much was being asked of me. It occurred to me sometimes that I was the only one masking 100% of the time. Although I'm NT I'm also human but I wasn't allowed be myself at all. As DS1 grew older and managed himself better, our house became calmer and I felt like I can breathe again a bit.

I did a parenting course for adhd children a few years ago and a book called 123 Magic by Thomas Phelan was recommended. It's a simple predictable approach that involves using visual hand signals rather than words. It's not specific to autism but the technique was recommended, that was by a CAMHs team about 6 years ago.

Trying to think a little outside the box here.
My son is autistic and 11, so a similar age to your daughter.
When he is woken up in the morning, it’s usually Dad, then I come down about 15 mins after and just give him a nudge. He knows he walks with his friend to school at 8:30, if he’s not ready, he will be going with me and his brother at 8:45.
I don’t ask him to do anything but I run through a check list.
Have you
cleaned your teeth?
done your hair?
had breakfast?
packed your school bag?
Then he deals with it if he hasn’t done it.
Evenings he knows he goes to bed at 8, lights out at 8:15, but we all know he won’t sleep, so we let him stay awake in his room, reading or listening to music or Alexa reading him a story, until long after we are in bed. he knows he can only get out of bed if he’s going to the toilet or getting a drink of milk.

Generally we have very few expectations on him and it seems to work.
Theres no shouting in our house or screaming. If he has a meltdown, I just hold him until he calms down. Shouting causes dysregulation in autistics and it seems your house is very dysregulated right now.

Quit shouting, just hold her. Tell her the expectations once ie “Abigail, you must be dressed to leave for school at 8:30am. If you are not ready we are leaving anyway.” And LET her be undressed when you put her in the car, LET her explode at you, you’re her safe person. Teach consequences. And let her shout and scream and call you names. Because at the end of the day it’s going to happen regardless, until you get her regulated again.

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?

This stands out for me because you are right, it’s not something you can enforce, once she’s shouting she’s doing it and understandably her brother is waking up. What are the consequences for her when she does this?
To a degree I think it’s more helpful to use a work towards approach and chunking it down into manageable pieces, I’d start with the light, is it a nightlight kind of thing? If so it doesn’t need to be switched off at all and can stay on all night if need be. My DD used to get up most nights and turn her main light on, and in the end we ignored it and she eventually stopped needing it.
Its telling that it’s fine during the holidays, I’m
presuming she’s masking a lot at school and then letting it all out when she’s at home because this is deep down where she knows she’s safe and loved despite what she’s telling you when she’s in meltdown.

I get where you are. I needed DS1 to be able to cope so that I could have my independence. But he couldn’t so I had to become full time carer to a severely dis regulated suicidal teen who was out of school when it became a crisis. I thought I had no more to give and couldn’t give up my life to his needs but in the end I had no choice. He’s never recovered from this and I am still a full time carer. Mental health is for life. There is a real difference between your being burnt out (had enough and need a break) and autistic burn out which is more akin to a complete mental breakdown. I think you are competing over needs when she will always win or more accurately lose.

This is a worse case scenario and not predictive.

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 think, and it's perfectly understandable for about 10000 reasons, not least because of your burn out, is that even when you try to tell her what needs to happen, you're still only sticking to it if she agrees. So from the start you're on the back foot because you're treating it as a rational discussion, with compromise and agreement from all parties. And that just isn't going to happen. she's not rational on this - her age, her ND etc all mean that she simply does not have the maturity or the skills to be rational and sensible at this age.

Now, I fully appreciate this is very difficult with a child like this. but again, I think you have to go into this knowing perfectly well she will NOT agree, and that she will NOT be happy. But that doesn't change the fact that you are right. A toddler believes they can run into the road and it's fine, and you're super mean for stopping them... but they are wrong, and you are just going to continue to stop them.

So I think you decide what you think is okay and appropriate, and then firmly tell her that's happening.

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)

So, at a more practical level - is there not a way this can happen? Does she have a phone? Can she acll/text you when she's ready? An alexa that she can drop in on you to ask you to come up?

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!

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.

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.

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

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.

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?