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.

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?

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.

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.

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 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.

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, 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.

Do you think it would help her even if she doesn't have any obvious sensory differences or needs? She doesn't have any particularly sensory aversions, for example. She doesn't have any obvious stims. She isn't really that sensory-oriented, tbh. So I'm not sure what they'd be assessing?

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!

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.

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.

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.

@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.

thanks. I’ll look into OT assessment. I’m meeting the school senco next week and I’ll ask if they have any recommendations of where to do that.

And thanks for the zones of regulation reminder - it’s so basic and something she ‘knows’ that I hadn’t thought about how helpful it might be if we actually use it directly. I can see so clearly when she’s on yellow, but she doesn’t. I think if we can hep her identify this and also what helps regulate her that would be a big step forward.

Thanks again for all your help everyone. I really appreciate it and it’s helped me come out the other side of a tough week. x