Bedtime struggle, 11 yo, presuming PDA

[PDAPDA]

DD is only 11. She has dx autism and ADHD.
And because she knows what time it is and she rejects starting to prepare for her bed hours earlier because she says her bedtime is 9, she is now going to sleep at nearly midnight.

‘Bedtime’ is 2-3 hours of arguing, screaming, slamming doors. She sometimes says she’s not tired and won’t go. She doesn’t try to rationalise or justify it though. She just refuses to go to bed, do teeth, get changed ready for bed. I assume this is PDA traits.

I don’t know how to disguise the demand of bedtime or teeth cleaning. These aren’t optional things. And I can’t spend this long trying to get DD to bed every night and dealing with hours of stress and aggressive criticism. We’re all exhausted.

So I need your practical tips please. She will also have night waking if she does go to sleep earlier (8.30 or 9) and is less stressed and I’ll need to give her a lot of support around that in the night . Either way in the morning she’ll be impossible to get up, if we need to be up at 7 for school. She’ll naturally wake by 8.30 even if it’s been a late night. I’m a wreck.

I think it’s because she’s stressed by school, but over Christmas it’s been going on school holiday nights too. I’m trying to find ways to deal with surrounding stress for her like more adaptations from school, trying to get her to do more exercise in the day. GP refuses to prescribe melatonin. Her eating is terrible just very few things. What else can I try?

Is DD under a paed or CAMHS? If so, they can prescribe melatonin. If not, you could request a referral to either or a sleep clinic.

Some people find Yvonne Newbold’s resources and Ross Greene’s The Explosive Child book helpful. Not aimed specifically at sleep, but will help generally.

Does DD have an EHCP? If so, request an early review. If not, you should apply.

Does she have ARFID too?

GP won’t do any referrals without CAMHS guidance which seems crazy. The school are doing that referral and EHCP in Jan.
I don’t know what the parameters are for ARFID but she is eating much less of a range and usually smaller amounts. Will avoid eating at all if stressed.
I would suggest we both go for a run or something in the evening but she doesn’t like the dark and cold. Maybe I could persuade her to do some yoga at home. She just doesn’t want any hint of being told to go to bed. I wonder if she doesn’t want the day to end because it’s closer to the morning and school.
There isn’t a quick fix for the school situation though. Thank you for the reading recommendations I will look those up.

If there isn’t another GP you can speak to and you can’t self refer (both to a sleep clinic and for ARFID) I would complain to the GP and speak to the school nursing service because they can sometimes refer.

Our DD has ASD with a PDA profile. Her PDA is very strong and to be honest exhausting for everyone.

I really don't mean to sound patronising, but the only thing that has 'worked' is you need to completely change your train of thought and expectations. Just because something works one day, doesn't mean it will work another and we need to accept that. PDA can affect any task, activity, even things she wants to do. The only way to get through the day, and even life, is to remove as many demands as possible, the pressure of the demand is the key problem, and those demands are stacked up every day.

Having to wake up X time, getting dressed, choosing appropriate clothing, leaving the house at a set time, travelling a specific route in a set time, school is absolutely full of demands, from set lessons to not being able to speak at certain times, the list goes on and on and on.

Right now our DD has 2 timetables, one with her actual lessons and one with other people and other rooms she can be in. She also is not under any pressure to actually do the work, and recently they are accepting her 'version' of work, the kids were asked to write a specific story, she wrote (on a typewriter) a different story, but she did write a story, a very good one at that. We are also having a problem with sleep, during the holidays she becomes nocturnal (literally). The only advise I can give you is, the more you 'nag' or try to fix it for her, the worse it will be. I think the most difficult thing about PDA for us as parents is what feels like doing nothing. PDA is about them controlling the demands on themselves and we must do everything we can do give them that freedom, otherwise the result is explosive violent outbursts, or them shutting down completely.

Reducing food intake and time of going to bed are both classic symptoms of a PDAer being more anxious and therefore needing more autonomy, in my experience.

I know you are looking for a different answer not this, but honestly, you need to stop telling her when to go to bed. The more you try to control the issue, the harder she will biologically need to fight against it to preserve her autonomy.

Explain to her that you've realised she's at the stage where she needs to decide when to go to bed. Ask if she is willing to do a brainstorm with you to talk through the logistical aspects that may come up (eg, "If you need to go to bed at 12pm and then find it hard to wake up at 7am, can you suggest a solution for us both to work to?")

Thank you both. I appreciate the strategies and I can see the logic in the change of mindset needed. I appreciate that there is an approach to follow because I am struggling and the normal stuff isn’t working.

It’s really confusing that now I can see clear PDA behaviours, then means that we should now be saying OK no bedtime and yes sweets for every meal. Learn nothing at all if you don’t want to. Like actually literally that. I can pretty much guarantee that if I say how will you wake up for 7 for school, she will just say I won’t go to school.

So this approach makes sense to me if the literal only goal, is to reduce anxiety. But what about other goals like maintaining physical health, supporting the other aspects of her mental health apart from anxiety? like keeping up her social relationships, or stimulating her brain through education and learning new things? I’m not even getting into the effect on other people around us. Is this approach a temporary measure or a permanent necessity in your experience?

We're about 5 years in and the method still stands. I cannot tell you how difficult it is, for us it is super frustrating. We try to make suggestions and (deliberately) casual remarks about things, so we are no in demanding she do anything, but try and jog her memory or start a thought process, and for the most part it is a lot more successful but it is not a 100% 'fix'.

It takes time and it does get better. We started with her never brushing her teeth or hair (among many, many other things), and yes she ended up very poorly with a major infected abscess in her mouth and a tooth that had exploded, she had to be restrained and carried off for an operation. I thought the whole concept of 'Mummy has been saying for years if you don't brush your teeth this will happen' would have made her start brushing, it didn't, it made it worse.

Only when I stopped nagging (you know like every other parent nags their kids to brush their teeth), told her if she needs this brush or that toothpaste I will get it and left her to it, it took months but she started doing it herself. Now I can say 'do you know when you last brushed?' she will go off in her time and do it. Her hair is bum length, a good day was her letting me scoop it into a ponytail. I just stopped nagging and chasing her every day, she asked for a specific brush and she goes off in private and does it herself now.

As for bedtime again I stopped nagging and watched for when she was winding down and getting tired on her own terms, and started asking 'do you want some warm milk?' at that time and indirectly start that process.

This is a long term thing, and why you need to pretty much forget about normal expectations. Some days she can do everything, that's great, other days she can only get out of bed and eat, and that's fine too.

Not to be forward, or patronising, you can PM me any time and I have probably been through it already.

So this approach makes sense to me if the literal only goal, is to reduce anxiety. But what about other goals like maintaining physical health, supporting the other aspects of her mental health apart from anxiety?

Yes, this ^^ is 100% the ongoing internal tension that DH and I still have to hold.

The thing is this - with PDA, none of the other goals can be achieved without reducing the anxiety first.

So reducing the general baseline anxiety level on an ongoing basis is not only the primary objective to ease suffering (because anxiety at a PDA level is horrendous for a child to live with) - it is also the gateway to your child being able to have the bandwidth to even approach the secondary goals.

With our DD, it can take several weeks/months of consistently reducing demands and increasing autonomy to see her baseline anxiety level come down. She also needs time to trust that she is safe from demands and that her brain can ease off the hyper vigilance.

Then, from this place, so much more becomes possible and within reach (slowly).

Negotiation becomes possible. Using comedy and distraction to engage with demands is possible. Perspective taking about how things impact others is possible.

Seeing (and experiencing!) DD with reduced anxiety levels was a real eye-opener for us. We see what the "well" DD is like, and it's so good to see. Now we are trying to work with demands (eg school) from the mindset that we hope she can find ways to engage with school and be well, but if she can't, wellness is the bottom line.

Also just a thought - transition to bed (night time) can be triggering for anxiety, so it's possible she could sub consciously be putting off going to bed because she associates it with a peak of anxiety. My PDAer gets terrified at night and cannot sleep anywhere except with us. My other DC is non-PDA autistic and his anxiety often peaks at bedtime and he has nausea, panic attacks. Both DC need a lot of close presence and support at bedtime.

If you think that could be part of the mix for your DD, is there anything you can think of trying that might give reassurance?

Thanks everyone for all of your food for thought.
I feel a bit overwhelmed that there isn’t an obvious way out of this anxiety phase of perhaps several years then. I don’t see my DD happy self regularly or routinely. She wants to be hunched over a screen ideally in bed or on the sofa and usually doesn’t want to leave the house and sometimes won’t even let me open the curtains in her room. Being inside with curtains closed watching tv on a sunny day are things I would associate strongly with depression.

I feel like we spend the time firefighting the anxiety to keep school going (with a lot of absences). Then maybe we might to see her more relaxed baseline towards the end of any school holiday time.

Night time is a huge anxiety trigger as she’s afraid of the dark. We already co sleep most of the time which is not great for any of us. Plus it’s part of the PDA I think that she expects us all as a household to go to bed at the same time as her, otherwise it’s not fair (in her eyes). So somewhere she has lost the idea that there’s a bedtime for kids and a bedtime for me.

Small breakthrough today she came to me and started talking about her favorite show, I took it as an expression of affection because she came to me for a conversation which is very unusual, and so I went with it. And even though much of it was a monologue there were a couple of questions to me about which was my favourite character etc. I thought it went well.

It breaks your heart to see them sometimes. It can get better. For our DD since the school have started to help (very basic atm) she is generally happier in herself. She still misses a lot of school (she needs an assistant but doesn't have one yet) but the days where she does go in she comes home less burdened, less likely to explode, and more likely to get on with the rest of the day which is an improvement.

For me the hardest part to let go of, has been 'normal schooling', honestly spent 6 years getting so stressed about her going to school I end up with stress migraines which knock me out for the rest of the day. School for someone with PDA is a massive mountain, every day. On those days your DD doesn't go to school, tell her its OK, that you understand, ask if there is anything you can do to help, spend the day doing whatever she needs to feel calm, and if you feel that is making it worse, change the subject, talk about anything she might be interested in.

Talking to you about something she loves is great, that is so sweet! If you read up on it and find something to start a conversation with she'll probably really love that!

What support is the school providing? Make sure that EHCNA request is submitted ASAP. If school (or alternative provision) was easier for DD home life is likely to be easier too.

They’re working on a new plan of support so we will pick that up in the new term. She needs a TA to be in each class, even if not working specifically with her, but this obviously would cost someone’s time so that seems a real struggle for the school to provide

That’s why an EHCNA needs submitting ASAP. You can do this yourself using IPSEA’s model.

DC self soothes by repetively watching some TV comedy drama series - they are word perfect. Bedtime got a whole lot easier when I agreed they could watch TV in bed. They drift off whilst watching one of these series. Now, I would have fought like a tiger to prevent that with my NT older child, and probably judged other parents for allowing a TV/a screen in a child's bedroom at bedtime. But it has solved our bedtime difficulties most of the time. After years of struggles. It works for us and we are all much more rested and good tempered as a result. I thought the Paediatrician might have harsh words. They didn't - they just observed we had a routine.

7yo DD ( suspected autistic, awaiting diagnosis) was doing this and I've started giving her a gummy recommended by a friend. She's been falling asleep by nine every night since ( about 10 days). It's NOT melatonin, but called a melatonic kids sleep gummy, you can buy them from Amazon and health food shops I think. They don't work for everyone judging by the reviews but they work for us.

Our DD is the exactly the same it used to be Moana, every night, without fail, she would be asleep within 20 minutes, nowadays its Futurama. She knows them inside out and back to front, but at bedtime doesn't really watch them as she is asleep really quickly.

Our DD is the exactly the same it used to be Moana, every night, without fail, she would be asleep within 20 minutes, nowadays its Futurama.

Us too!! It started off as a Christmas-themed film watched on repeat .. repeat ... repeat ... until it switched to a new film ... repeat ... self soothing is the perfect description for it.

Really hear you OP about seeing her baseline anxiety reduce a bit by end of summer hols.

Lovely that she chatted to you.

@PDAPDA how are things going fro you now? I’ve found some success with a reverse. Absolutely do not get into bed right now! Hey you, don’t you dare get into those pyjamas. We also stay with him till he falls asleep. It’s a pain but the only way really.