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

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.

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.

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

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.

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!!!

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.

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.

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.

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.

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

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.

Place marking

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.

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.

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.

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.

I have been reading a book "Who's in Charge?" that a Mumsnetter recommended and apparently he (the author) says/said to his son "You hate me? I must be doing my job properly then." He said his son found this irritating 😂.

Being a parent is no picnic.

Sorry it’s tricky. I know some people have success with PDA strategies but I have also read stuff that says that it’s mainly a form of anxiety and that if you remove all demands then it may make kids mildly easier to deal with in the short term but long term it doesn’t deal with the anxiety. I have decided to go the other way, when my daughter says she hates me I tell her that’s not a nice thing to say. I feel like allowing her to speak to me like that gives a false impression of how the world works - there are usually natural consequences to speaking to people like that - and it also models self respect and healthy boundaries. Sorry this is probably not helpful but sending solidarity.