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!

Oh on bad days EVERYTHING irritates my PDAer. I have to find my amusement somewhere!

You can defuse things somewhat by making something else the bad guy. We use Alexa timers a lot and have a silly family phrase for "TMI/rude question, not answering".

"Who's in Charge" is helpful but also long and waffly. As it deals with some heavily taboo subjects I think he probably had to self publish without benefit of an editor.

For practical tips, Jeffrey Bernstein's 10 Days to a Less Defiant Child is good.

My dd has elements of this.

Yhe worse thing lately is I’ve asked her for a birthday list for her birthday in July. Why l did this l’ll never know. I should know bteee by now.

Anyway, she’s decided on she doesn’t want anything.

I can offer a slightly different perspective OP. I have ADHD. I was diagnosed as an adult; the possibility was never raised or discussed when I was a child, despite it being clear with hindsight that I was exhibiting clear traits. Part of my spectrum of ADHD traits is elements of PDA, and these were especially persistent when I was a child.

My parents' response when I was a child exhibiting PDA behaviours was always, always to punish and blame. I was labelled difficult and stroppy, punishments were escalated until I was forced to comply, I was branded unlikeable. It did untold damage to my self-esteem.

I can't tell you how much of a difference it would have made to me if my parents had tried to help me, even imperfectly. Just to know they were on my side, even if they got it wrong sometimes, would have meant everything.

You're not going to be perfect every time, because nobody is, and sometimes that is going to result in conflict. But the fact that your daughter knows that, despite the imperfection, you're doing your best and that you know it's not her fault, will make all the difference in the world.

Thanks @Needlenardlenoo I will try the ten days book too!

@ArseInTheCoOpWindow sorry that made me chuckle! The ADHD in my daughter means she always has a long list of birthday present ideas year round. Never a problem for her to list them all! Can't get her to stop talking about her birthday (which is October), she has been talking about it since April 🥴

Thank you @Hoooray that gives me hope. I don't know if she is actually PDA or that it's elements of PDA as part of her ADHD traits as you describe yourself. But the autonomy seeking is so clear and always the trigger if she feels a loss of autonomy. We have had many conversations with her over the last few years about how we are trying to find ways to help and support her big feelings so she is aware we want to help but equally I sometimes feel that emphasises (in her mind) that she is a 'problem that needs solving' so it's hard to get the balance right. Then there are evenings like last night where I just feel like giving you and end up in silly back and forth arguments with her that neither of us can win.
I will keep trying and keep letting her know we love her as she is. Thank you x

Sending support. DD (adopted) needed a therapeutic parenting approach - my goodness, how judgemental other people were! As well as the constant exhaustion of parenting in a way we aren't 'trained' to by our own experiences.

About the screens, what worked for us was using the settings to switch off at a certain time / after being logged on for the agreed period of time. So.it wasn't me saying 'time's up', the tablet simply logged Dd out.

Place marking

PDA is extremely hard emotionally for parents so my sympathy is absolutely a given here but I think you need to focus on make practical changes to avoid burnout for yourself and your kids burning out.

Their school needs to urgently reduce demands on the child and if necessary that may mean finding them a more appropriate school, also please get your EHCP request in if you haven’t already done that. Also you need to support yourself and save your energy for what you need to stay well and calm. When things are more peaceful at home you can regroup and plan for the future but being stuck in fight or flight mode long term is not sustainable.

Thanks @Baital I will try that. Using Alexa to tell her time is up does not work - it's still a loss of autonomy even if not coming from me. But anything is worth a try! I think what I probably need to do is when it's iPad off time, I give her some undivided attention to replace that with. But it's hard with chronic fatigue to muster the enthusiasm to do something that will satisfy her need to direct me!

Thanks @EHCPerhaps unfortunately I have not had any luck with school. She is such a pro masker and she manages to keep a lid on what her nervous system and brain are telling her to do, whilst she is at school. She tells me what made her angry at school and how it made her feel physically, and how hard it was to not say or do the things her body wanted to (scream or lash out). So school see basically nothing. They see a bit of an emotional child (e.g. cries easily if something upsets her) but they don't really see the daily difficulties with friendship as it's not the teachers on playground duty (she wants to decide/control the games they play) and they don't see her frustration/boredom/anger at the continual losses of autonomy throughout the day, or the need to move and change things up, or the need to randomly shout or squeal, the equalising behaviour. They see a child who is 'fine' in school and doing fine academically so they do almost nothing (fidget toy, occasional movement break, but mainly movement breaks are done as a class as others have more evident needs than she does).
So I can't get them to reduce demands, they would not even consider an echp and if I applied their input would be to say she is fine and they see nothing. They seemingly don't care that we have daily episodes of extreme anger and resulting physical behaviour at home. It sometimes feels like we have a daughter with two different personalities....

Totally agree being stuck in fight flight is no good for any of us, just struggling to find a way out of it x

Can you play Roblox or Minecraft (or whatever) with her and let her boss you about?

Thanks @Needlenardlenoo I haven't tried this as I have no clue how to play either of them!
But she has tried both so she knows the basics. She doesn't seem that into it as she doesn't often ask to play, it's more TV or kids you tube she wants. Playing Minecraft with her would probably work ok on the weekend day time but it's getting the iPad (which she's mostly using for TV) off at bedtime that is the worst, and I don't want to start video games at bedtime. But it could work to give her a 'hit' of autonomy at other times! When she has tried stuff like mario kart on the switch it always ends in rage as she usually doesn't win. But it sounds like Minecraft is primarily about building so that should be less contentious!

She loves role play games and bossing me around that way but I absolutely hate role play so probably don't say yes enough... I think I need a few different things that she loves at the ready when it's time to switch off. She is often insisting on starting a new craft project at 8pm, and I say yes if I can, but she has very low frustration tolerance with craft projects!

I don't have the spoons to reply properly right now but just wanted to sympathise. I have 2 autistic DC, youngest is PDA.
We've had to learn a totally different way of parenting and it's been a bloody hard few years.

How about stuff like slime or playdoh or "arrange all your fidgets/teddies in rainbow order" at bedtime? Bath "potions" are quite fun too. I got some from Not on the High Street. You can mix up a ghastly colour in a washbasin and then wash it all away.

OP I am so sorry to read this but it’s a very familiar story and masking with girls is so common. You are not alone, but your child needs additional support and a thing to get your head round is that nobody at school seems to want to take parents’ word for it on what is happening at home. It feels so gaslighty when the school tell you that your kid who is very distressed at home is absolutely fine in school. Bur this is because they are probably really overstretched and undertrained and a girl who is ‘fine in school’ to them is not causing any immediate problems in the classroom so that’s their priority to tackle. But masking obviously isn’t being fine, it is a sign she is not coping and ignoring it at school stores up trouble for the future for your daughter and that’s not fair to her.

So I’d ask for a meeting with school senco again and say this is not sustainable and more support is needed, and I would consider seeking a GP referral for autism and asking for more support for her ADHD. Even if the waiting lists are huge I would recommend just to get yourself on the list. I can’t see how old your daughter is from your posts but if she’s in primary tell the senco and GP that you have big concerns for how she will handle secondary transfer. Tell them in great detail all the things that happen at home. (If she is in primary emphasise this, because in upper primary or on arrival at secondary the wheels can come off from the making and coping due to increased demand at school and this can result in the child being very stressed and maybe unable to be in school.)

I would recommend you to look at PDA society website and get in touch with a local group for support for you and find advice for ways to support her. Also please join the EHCP threads on MN because there are very knowledgeable posters on there. You can apply yourself for EHCP assessment as a parent you don’t have to have the agreement of school. IPSEA is a charity which offers templates you can use to apply to your local authority for this assessment. That’s a long list of things to consider so if you can outsource some of this to your DP or anyone else please try to do that while you’re ill.

Things got a lot better for us when we implemented a low (/no) demand approach at home. No more meltdowns or aggressive violence (though still quite a lot of overwhelming sensory-seeking hitting).

DC attends school, with few complaints, which is huge. And there was a time we didn’t see how this would ever be possible.

BUT we have to do everything for him. Being him his iPad, bring him the charger, hand him his drink even if it’s on the table right next to him. He’s nearly 9 and doesn’t dress himself or brush his own teeth or wipe his own bum. Won’t sleep by himself. Has ARFID and only eats 4 things, and screams if they are not absolutely as he wants them (toast exactly the right colour, apple the right size, colour, texture). Doesn’t respond when we speak to him most of the time.

No possibility of OT or therapies as he won’t leave the house at all except to go to school, won’t engage in online sessions.

The house is constantly full of YouTube and video game noise. I had to give up my career, my DH and I are never able to talk to one another or DC loses his mind.

Yeah, there are strategies, and we work hard to implement them. Declarative language, plentiful use of humour, lots of ‘plan C’ and collaborative problem solving.

But it’s constant, constant work. And it’s not like the success of those strategies has resulted in anything that looks like a workable family life, where we might enjoy days out or sit down to dinner together of an evening, or where both parents can work, or where either of us has time or bandwidth to pursue any hobbies or activities inside or outside the home.

The strategies keep DC able to go to school (which gives me a few hours a day to catch up on housework and life admin) and have reduced the amount of violence and screaming.

No idea what the future looks like. No headspace to think about it, really. On days like today it doesn’t feel like much of a life, and I envy the parents who are consistently able to see the bright side.

Aw @VoltaireMittyDream I can recognise much of what you describe. However, things got a lot better for us between age 9 and age 12 so I hope that's true for you too.

I took on a bit more responsibility at work this year and increased my hours, and I've been going to a painting class recently. DH and I had a night out a few weeks ago.

I couldn't have imagined this when I was where you were.

Of course we have teen type problems now!!!

All the SENCOs at primary (consecutive not simultaneous) plus the secondary one have believed us about the extreme disregulated behaviour at home despite DD being pretty good at school

We've been lucky. I know the opposite is more common.

Thank you so much for this glimpse of a more hopeful future!

We've had two years of primary SENCO pretty much telling us it's our fault, bad parenting, "fine in school" and so we just need to get DC into school, at any cost.
Turns out the cost is mental health issues for the whole household. Yay.

Just catching up with this thread. DS3 only masked in reception, by YR2 he was having regular meltdowns and had a couple of suspensions. It was a horrendous time as they wanted him gone but were also telling the LA they could meet needs, and the only problem was me(!)

DS3 hasn't attended school since February and was only ever part time from starting there in September. We'd moved him as his previous school was 1hr15 mins journey, one way and only had KS3. It was actually an independent special but it was all a bit of a disaster.

I ended up arranging and funding provision whilst we get the EHCP sorted out. I booked a tutor, but didn't think DS3 would engage at all. It's in a church hall as he's very protective of his home space and hates online.

He's bonded almost instantly with the tutor and has produced more work in 2 sessions than his entire time at his school. The tutor is also ND and just gets DS3.

I've also arranged 1:1 cookery lessons and he's enjoying those and also helps make our evening meals. It is very difficult to get him out of the house and we've had some close calls. He doesn't want to know the recipe in advance as he says then he'll just keep thinking about it.

We've also found hygiene a bit easier now he's fixated on cooking, as we can say chefs need to be clean, so he then showers etc. But not when asked it's usually when I've left the room.

So we're having success, but I'm conscious he could decide tomorrow he's no longer interested in cooking and then it will all fall apart. Sleep remains appalling.

It grinds my gears this assumption that parenting (well, mums) is the issue.

PDA kids are much, much harder to parent.

I have to do ridiculous things to achieve DC hygiene.

All I can say is thank god for Hismile, and multi coloured soap flakes.

The most helpful thing I have found for my son is a book called Big Baffling Behaviours by Robyn Gobbel.

It has some naff bits in it but the practical advice what to do in the moment is spot on and I find it incredibly helpful the way she breaks down the different stages of dysregulation into the four watchdogs. I have it on kindle and when I stop and check the book it 99% of the time has something useful for me.

That and truly embracing the autonomy, trust and radical acceptance part. (Which is more where Ross Greene comes in - this is a good approach for figuring out non-standard, outside of the box solutions for problems, but I don't think it's a one size fits all.) The more I get into this the more it makes sense. I am not going to say that I get it right all the time because I really don't. It is so extremely difficult not to get pulled into that vortex and react in a very childish manner myself. I've heard about studies which show children with ADHD who are not medicated tend to have parents who do not parent in an "effective" or "correct" way and then when the children get medicated, the parent's parenting skills magically improve. Those studies are controversial because it sounds like they are blaming the children, but I think it's fascinating because it really is exactly what I experience - when DS is dysregulated it is almost impossible to stick to good parenting ideals. Partially because when he is dysregulated his behaviours seem incredibly honed and perfected to push my specific personal buttons so you're constantly in a state of stress and escalated yourself, but partially because you don't have a flipping chance - you try to address one behaviour and this immediately triggers five other things you have to deal with and a chain reaction e.g. setting siblings or the environment off and I can't physically be in five places at once so I have to very quickly make a snap decision about which one thing to address and maybe retain a couple of the others in mind to try to address later but because this is happening on a loop all day, I'm lucky if I get a chance or remember any of the things to address later.

One day I tried to pit the stubbornness of the ADHD/PDA-ish child against the stubbornness of a 3yo (I thought this was a genius move, no, it was terrible even a 3yo can't out-stubborn a PDAer.)

I think PDA is much more related to ADHD than we currently think. I also think the term reactance is useful - this is a more temporary state where someone feels like their autonomy is threatened so they react in a defensive manner. I find that if my son is well regulated and well within his window of tolerance, he doesn't seem to show signs of PDA at all. It is more of a stress response for him than a default status, but he is in a dysregulated state a lot of the time, so it can be hard to differentiate.

Thanks for all the replies this evening, I have much to catch up on and will respond tomorrow .This last week the bedtime delay tactics have ramped up a notch and I don't know why, but I guess it may be related to me going into hospital next weekend for surgery, so I will be away a few days... So another delightful evening, though it could definitely have been worse.
I will read everything properly tomorrow, hope we all have a good rest of the weekend x

@seriouslynonames
I hope your operation went well and your recovery too.

Did all of this get any better over the course of this last year?

Thanks for asking @ScrollingLeaves
I can now see that I didn't reply to all the later replies I got on this thread, all of which were really helpful, so belated thanks to all posters!

The surgery went ok thanks. I was quite unwell for a few weeks afterwards, although I was at least at home. So DD had to accept my lack of participation in general day to day life, and especially bedtime, for a while.

I'm recovered from the surgery but now just back to my 'usual' chronic fatigue baseline, of just about being able to manage day to day, but struggling with every little cold that comes into the house, and there have been many!

DD is doing ok. She's 10.5 now, in year 5. She likes her y5 teacher, which helps with getting her to school. Bedtime is .... ok ish. We have just accepted and adjusted so that one of us, usually me, will body-double her from when it's time to stop whatever she is doing/watching, until she falls asleep. We managed, for a while at least, to substitute a big chunk of the tv-watching for audio-book listening whilst simultaneously doing some art and craft or other activity. We mostly now manage to avoid morning TV before school, which is great, as it was so hard to get her to leave the house if an episode of her programme was mid-way. She still watches too much tv but it's better. And she is mostly more accepting of the message that it's time to stop. We still have occasional blow-ups on that, but much less frequently.
And in general her emotional regulation seems to have improved overall. We still get occasional episodes of hitting, kicking, throwing, pushing, but so much less often than we did only a year ago when I posted this. I still sometimes get into petty squabbles with her, and then feel an idiot for being drawn in, but it's definitely less.

I still have to do so much for her though, keeping things low demand. I still get her clothes, help her dress and undress, get her toothbrush ready, wipe her bum sometimes, bring her a drink, pack her school bag, make her lunch box, remind her that it's swimming /own clothes/ whatever other special day at school, and if I forget the 50p charity donation or whatever, then it's totally all my fault. Rarely does she want to take any responsibility for doing or remembering anything, unless it's something that goes really well and then of course that's all down to her 😄

She is generally much more pleasant to be around. All the old issues remain, but less powerfully, less frequently, and she does spontaneously apologies or recognise she took things too far at least some of the time. Which is progress!

So I think a combination of continued low-demand and us attempting to co-regulate better, especially at bedtime, plus her own maturity and self-awareness developing, are finally paying off. I am concerned about puberty (which she's super-aware of and hyper-vigilant about any changes to her body) and about the move to secondary over the coming year or so. And she has started to have more frequent episodes of being 'sad for no reason' as she describes it. They are usually just one evening or day at a time, and we don't make a big deal of it, but I can see that her needs will be constantly evolving and that will keep us on our toes!

I hope things are ok with all you lovely posters and your families.