To ask for solidarity - and positive stories (parenting PDA)

[seriouslynonames]

I know others have it worse than us for a whole range of reasons. But I am still really struggling with the mindset shift needed to successfully support a child with PDA. She doesn't even has an ASD diagnosis so we don't have it on paper that she is PDA. She has a diagnosis of ADHD but that doesn't feel like the full picture. She fits the description of PDA, particularly strongly the pervasive drive for autonomy. Typical ADHD strategies don't work, neither do typical ASD strategies. Only PDA strategies do. But it's so hard to consistently implement them when it can feel like you are handing all control to a 9 year old.
I know how I should respond to her when she is escalating or equalising but in the moment I can only manage it some of the time and the rest of the time I get drawn into some kind of ridiculous discussion or argument that no-one comes out of as the winner. My husband is the same - sometimes does or says exactly the right thing but just as often gets drawn in. It feels non stop and is exhausting. Once things are calm again I tell myself we can do this. Then it all goes to s* again.
Can others relate? Has anyone found success with being really consistent with PDA strategies and being that safe nervous system? I feel like my nervous system is just as jumpy and sensitive as hers so it's hard to always be that calm safe person she needs.
Sorry if this just seems like a rant or a bit rambling, it's been a hard weekend and we have some harder times coming as I need major surgery in a few weeks. I don't know how I will recover safely with some of the challenges we experience with her 😬🥴. Keeping my fingers crossed for better days and weeks ahead!

I'm glad things are a bit more positive for you @seriouslynonames

For us the transition to secondary has gone well (moved last Sept), she is coping better there than she did in primary (I have my theories - regular movement breaks between classes, regular change of environment, not stuck with a teacher you don't like all day). But it's still on a knife edge every single morning whether she can go or not and her attendance is still at a level where a less supportive school would be fining us...
And another light at the end of the tunnel for you...puberty has helped with the hygiene. We no longer have issues with showering and even teeth brushing happens unprompted most days.
We are as low demand as possible too and it has helped

thanks @Hollowvoice it's good to hear a positive story of the move to secondary, you mostly hear that's when things can go wrong. And really good that you have a supportive school, that's half the battle!

Things are better with teeth brushing these days, but shower/bath and hair wash are still very much a balancing act for DD!

I feel like I have learned a lot over the last few years, but there is still so much more to learn as they are constantly changing as they develop, with changing needs and different challenges!

Have a DD like yours. Masks at school, horrendous at home. Things got a lot better as she got older and could naturally have more autonomy. While other parents were finding their kids got more difficult, mine got easier. Ours now mid teens and can stay home if she doesnt want to join us on trips and go out if she likes. We gave her an allowance early to reduce the demand for money and stuff. We tend to holiday in groups so that there's a third party (not us) in charge. She's a very independent and overall mentally stable teen now. Keep the relationship if you can. Things will improve.

Is she medicated, OP? I couldn’t see any reference to meds.

Medication was a game-changer for DS1, in all respects.

My 7yo daughter is exactly as you’ve described your daughter a year ago.

Literally everything is a battle, we spend all day trying to keep her happy but she will pick a fight over anything.

Bedtime is the worst. As you said, as soon as the fun is over and it’s time to get ready for bed, all hell breaks loose. She trashes her room, attacks me, screams and shouts. This goes on for about 2 hours every night.

She has no diagnosis (“she’s perfect at school”). We’ve been through several different services. The sleep clinic has just told me to try 5 magic kisses and the vanishing chair at bedtime… 🙄 she doesn’t give a shit about their bedtime games. I’m so sick of printed sheets of paper being posted out to me by children’s services.

If only they had to live in a constant battlefield every single day.

Honestly I think the key thing I've learned in parenting is "everything changes"
Everything is a phase (sometimes a drainingly long one!) and then something else happens. Despite learning so much about autism with the PDA child I truly didn't see my eldest's burnout coming until it hit, and it hit hard and requires different support.

thanks @Milly16 that sounds really positive and gives me more hope that she will be ok and our relationships will survive intact!

@PassTheCranberrySauce no she isn't medicated. We have toyed with the idea but haven't gone for it yet. When she was diagnosed 2 years ago she was coming out of a phase of acute anxiety and one of the things that made her super anxious (and still does to an extent) was illness and medication. She wouldn't even take calpol, so we just didn't go there.

At the end of last summer we talked about it again, and talked to her about it too. She was open to the idea. But as we had a private assessment it's not so straightforward and very expensive to start down that path. I did approach the clinic we had used but then she changed her mind about trying it. I think she would find it hard because if she had side effects I think it would put her right off continuing. She does not do well if she feels sick or gets stomach ache, or a headache, she is hypervigilant to sensations in her body. I was also a little concerned about the possibility of loss of appetite. She generally eats well but she doesn't any weight to lose. All the different meds seem to affect people (in good and bad ways) so differently it's a bit overwhelming to know where to start. However, we are still open to it, and I think I could probably persuade her to at least try it, if we were comfortable that it would help. We will no doubt revisit at some point...

@AnonSugar sorry you are experiencing these challenges, it's so hard! I don't know if I have any helpful advice for you but I'll try!
When the difficulty was getting her upstairs we tried saving one last 'game' (matching cards or something not too exciting, or a bit of role play, her favourite activity) for once we were upstairs in her room, so there was an incentive to go up. When the difficulty was getting PJs on we tried basically doing it for her whilst she continued playing with her doll or whatever, so she didn't have to interrupt her play to do it herself. When it was teeth brushing we started letting her brush them once she was in bed, and she would spit into a flannel. We still take this kind of approach now, even if the activities are different. Although she mostly cleans her teeth in the bathroom now. I spent so much time trying to talk to her to understand what it was about getting pjs on or doing teeth etc that she didn't like, wondering if it was sensory etc.
She used to be so resistant to anything related to going to bed and kick up such a seemingly disproportionate fuss about anything to do with bedtime. Eventually we clicked that it was just some kind of generalised fear or anxiety about what bedtime means - being on her own, being in the dark, being separated from us, having to do 'boring' things like get changed and do teeth (I mean, I still hate doing my teeth!). And once we understood that it wasn't the specific activities, or any reason that she herself could articulate, and that it was just her nervous system responding to the thought of being separated and alone in the dark, we could completely adjust our expectations, and our approach to bedtime, and feel much more compassion towards her. Still, every night, one of us, mainly me, has to be with her until she falls asleep, usually 10pm. So I don't get an evening. Me and DH don't get to watch tv or even talk to each other (too tired once in bed!) but my expectations have adjusted and I don't resent it the way I used to. I think I used to be trying to rush her along and get her into bed because that's what you do, then you get your own time once they are asleep. So I was always frustrated that she didn't want to get ready for bed, didn't want to get pjs on, teeth done, read a book etc. Our first DD, 5 years older, was totally straightforward with bedtime. She would say she was tired by 7 and be in bed lights out by 7.30 and sucked her thumb to get to sleep. So we had that as how it 'should' be rather than thinking about what our younger DD's actual needs were. So if you think there might, for your DD, be an element of her being afraid to go to bed, for whatever reason, you might be able to find ways to help her make that transition to bed more gently. With our DD keeping our own nervous systems calm, which in turn keeps hers calm, really helps. And if she asks for a drink, or a snack, or to do one more page of her stickerbook etc, then generally we say yes because saying no will make it take longer, and you have to pick your battles!
Sorry that's a bit of a long rambling message, and may not be at all helpful!
Good luck x

gosh that sounds hard @Hollowvoice I hope things improve (or have improved) with your eldest, burnout sounds so tough to manage

Thanks for replying. Unfortunately, it doesn’t really help here. She also has a twin sister who is very similar but less extreme. We have always had to sit in their rooms until they fall asleep, which is usually up to 2 hours after bedtime. She’s usually trashing her room while I’m in it. I only leave if she’s being violent and that makes her more furious.

She’s always been the “just one more game” type of kid. But it’s never one more game. It’s something else straight after it, then something after that and so on. She always wants more but it’s never enough for her.

Sorry, I’m just venting. I’m so tired of support services that give zero actual support.

Just wanted to say I see you and you all and you are doing amazing work parenting these incredible human beings. It is so hard with Pda. Agree ADHD is much more part of it than evidenced currently .

Hi OP, lovely to see an update.

We've been to hell and back with school. DS started in September. I'd pushed it as long as I could so he was already 7 when he started (we live abroad). I did absolutely everything I could think of to try and prepare for it but unfortunately nobody really listened to me so it was a complete and utter disaster. Three months of daily meltdowns and almost daily phone calls from his teacher. I had to sit in an office with somebody telling me she is the nicest teacher ever and truly loves every child. I said I am sorry but I don't believe you. I felt like she hated him. She was ready to send him to the special school for SEMH (not that it was her call). He had no safe adult in that entire place and the moment he stepped in through the door he was in fight or flight mode all day, they all thought he was doing it to be naughty and get attention (but they even acknowledged that giving him attention had no effect on the behaviour either). I was honestly astonished he managed to learn anything at all from the sounds of what he was like in the classroom. And I have never ever seen him so distressed as how he was a couple of times after school.

I pushed everything through and managed to get him some medication to start the week before the Christmas holidays and despite a few bumps with the clueless teacher making some unhelpful comments, it's completely turned everything around. He's not dysregulated all the time, the SEN teacher they brought in to support him explained to me how before, when they tried to reach him to help him when he was getting overwhelmed he wouldn't even acknowledge or respond to them, whereas now he does and he can engage with their strategies. His autistic traits are coming through strong now with the medication! I did talk to his doctor about this and she said she wouldn't retest now because she felt we should concentrate on the ADHD which is fine. But she did confirm that the autism test they did before was inconclusive because he was too distracted and wouldn't cooperate with half of the questions, plus insisted on speaking English for half of it 🙃But either way - he is thriving. Won't do his reading practice sheets but will sit and read every single incomprehensible German place name on a tram map so he can recreate the entire network perfectly on a computer game. He's doing fine. I do worry about his weight because he's gone down to the 2nd percentile and honestly is just so tiny - I can pick him up and carry him like I do with my 4yo. But no doctors are worried about this. I even got this very stereotypical "before/after medication" ADHD comparison of his school work, which is obviously not the whole story, but it's honestly a really good illustration of what's happening and what his brain is like before/after. I even reminded DH the other day that we had argued a year ago when I said he needed medication and he apologised and said I was right

@seriouslynonames

Okay, well, starting medication means a long period of titration (trial and error) to get (a) the right meds and (b) the right dose. The eating/anxiety side effects are negligible compared to the improvement in focus/impulsivity. You can get a shared care agreement with the GP if you’re concerned about cost.

@seriouslynonames
It is good to hear that your operation went ok, but it must be difficult still with your fatigue.

Your update about your dd sounds very encouraging. Well done for all the strategies you have found. (Going on to audible instead of TV seems to have been a good idea. Basically screens seem to bring problems.)

This Sheffield Children’s hospital has very useful videos teaching children daily skills for life. I have experience of the one about ‘bottom wiping’ working very well. There are also extra tips/resources if you scroll down from the main list. The videos were most likely developed for children with special needs but they are good for all children I think.
.www.sheffieldchildrens.nhs.uk/services/motor-skills/independence-skills/