any parents of children with PDA out there? loosing the will to live here.

[staydazzling]

I have a ds 6 years old with PDA suspected (but pretty obvious tbh) undergoing assesment. its become so draining as eveything daily becomes an ordeal and is traumatic as you'll all be familiar. do any of you have any tips and tricks to help function with a child with PDA. ??

Thanks xxlostxx it did and didnt, daddy comes home friday (works away) so i realise thats an added anxiety thing every 10 mins, is daddy home yet? the food thing is a massive issue though. Sadly, the hv i think try to get it but dont really. The nail inthe coffin yesterday, ds2 was onthe loo screaming for me to help him sort himself i said stop screaming im coming, i heard a bit of moving about but thought nothing of it whilst i came to the bathroom, he the ran upstairs again slammed the door shut and when i got open saw he had , in the time id told him to stop screaming and me to get to him ran downstairs (unwiped *ew) stand on a kids chair, unlock the kitchen door bolt, (needed due to him) climb the washing machine onthe kitchen side onto the tin to get some chocolate out of from my mums birthday last night. . Oh but apparently his food issues can be resolved by 'portion control' isnt that nice not complex psychological issues hmm, so the consequence of that was no movie night so yeah not a good day . Its a real uphill battle. hope you 2 had a good day yesterday.

No diagnosis as such but my son fits the PDA type I think. Just reading the above posts and really empathising. Yes the rudeness in front of others is really embarrassing. Also he occasionally gets really violent with me which stresses me out. I'm exhausted at this point in the holidays too so taking it to heart.

Big hugs star patch! Seen a regression here too definitely

Thanks

These school hols have been the worst by far, I really feel for those going through the same but it's a comfort to know I'm not alone
DD's behaviours have just escalated this year so much. I don't know if maybe the onset of puberty is a factor (she's 9.5) or everything is just all unravelling now. But I'm finding it more and more difficult to manage her. We have 2nd camhs appointment this week, been told it will take approx 90 mins so not sure what to expect. Been told it's for caseworker to get to know dd. My biggest fear is that they conclude there is nothing they can do for her and to carry on as best as I can!

xxlostxx sorry to hear that same here tbh. Im at the very beginning of cahms journey not even had an appt yet did the quesstionaire and waiting for an appt about support in school, in September, im.dreading coming away with nothing and being in this situation forever.

This is like my son aged 11.5, he is demand avoidant and has to be in control at all times, you cannot say no to him or he gets really angry. We feel like we are in crisis at the moment, because he cant cope with holiday club settings we have paid for a nanny to look after him at home for the rest of the summer. He is waiting for an assessment for Sensory processing disorder but I was told that PDA is not a recognised diagnosis and cannot pursue this. My Ds is also increidbly rude and argumentative and sometimes violent. He was diagnosed ASD at 9 and he is due to start 2ndry in two weeks.

It sounds very hard for you atm vickibee its so stupid that PDA is listed on autism.org but is not recognised here.

It is really hard. We got a letter this morning saying he has been allocated a social worker for an assessment. I am not sure if this s good or bad news. My. Dh thimks tbey are nisey Parker s

That sounds really tough stay. From what I know of PDA it is linked to high levels of anxiety. They like routines, boundaries and control as a means to make life more predictable, less scary and to reduce anxiety. If he is used to a strict routine from the school day it is not surprising that you are finding holidays difficult.

The impulsive behaviour surrounding food sounds more adhd so it might be worth looking at info on that too.

Bluemillicent's channel on youtube has some good vids about pda and managing behaviours (he is the father of a child with pda).

Also Limpsfield Grange's leaflet is good.

Interesting video about girls at Limpsfield (one has pda) here

Here is a good site for managing ADHD type behaviours, but lots that would work for pda too.

www.additudemag.com/category/parenting-adhd-kids/behavior-discipline/

Thankyou bananas ill have a look, hmmm thats intriguing vickibee what kind of assesment is it for?

We feel in crisis and it is going to be n assesment of his meeds and also our needs. At the moment it just usnt working. Apparently they are going to look and see if we re eligible for direct payments so we get some respite

Oh well hopefully something comes from it and you get some respite, its whenever your hear the word Social Worker its worrying.

My daughter presents with all the signs of PDA but as it isn't in the dsm5 her diagnosis is autism. Don't be afraid to be firm with your child melt downs are awful but they'll be worse when he's bigger than you so you need to have a handle on it now. Pick your battles. I give my daughter choice where I can eg she picks her own clothes, haircut, she can colour it if she likes, has her ears pierced, chooses the decor in her bedroom, I also go in as little as possible. This means when I do say no I'm not doing so too much and she can cope. Consistency is key don't say no if you know you won't stick to it. PDA behaviours often stem from anxiety and consistency means that they at least know where they stand.

I appreciate when people say pick your battles which tbh most parents of SEN children spend their lives doing, but what about the ones you cant pick? and end up in a horrific meltdown, i can give ds2 a choice and still have a horrific meltdown that can last a loong time, my aspergers 9 year old is a walk inthe park in comparison.

staydazzling all I can offer is to say that DS (9) is easier now at 9 than at 6.
He's still hugely demand avoidant, but the huge meltdowns are fewer (certainly at home anyway - school is harder for him but he starts SS next week).

Sometimes there's no way round but through - but wherever there is a way around I will take it, even if to other parents it looks like 'giving in'. He's still an extremely polite and caring child, it's just that sometimes his anxiety at existing in a world not tailored to his way of thinking gets too much, and his only way to feel secure is to have complete control.

Hang in there. I expect it will be a very different parenting experience to that of your older DS.

My daughter had spectacular meltdowns when she was younger but she is 11 now and it is much better I believe this is because she knows where she stands. No means no and there is no point in melting down and if she does it's so rare that it isn't the end of the world. I used to feel how you do now but I don't any more it will get better.

Wow xxlotsxx, I had to double check your username to check it wasn't one of my previous ones!!

My dd (9.5) is at the start of a camhs (they call it cyps) in our county. They also don't recognise pda but I have to say I've been really happy with the cyps appts so far.

My dd has had a full cognitive assessment, as there's quite a lot going on with her, she's likely dyslexic too and partly I'm hoping she's displaying pda traits because of severe frustration with learning difficulties she has.

Summer holidays have been better than last summer, mostly because we're abroad and she's able to be under the water in the pool most of the day which she loves, but we did have a meltdown on a boat yesterday which was awful. In the end she jumped in the sea in anger/panic but it calmed her down and seconds later "this is brilliant, thanks for hiring the boat!!"

for you all, it's a lonely, judged place a lit of the time.

I've found quite a few bits and bobs that help, I'll post again when I've more time

Reading back my post marshmellower sorry if it appeared snippy, didnt mean it too. Oh no put your back into it, must have been awful but glad she cheered up inthe end.

Mumunderthemoon it gives me so much hope to hear the meltdowns may decrease. DD (9.5) has always had them but they last so much longer now (3 hrs was the worst ) and she is violent with them. I'm feeling so low. Don't want this life if this is it from now on!
Last camhs appointment was disappointing, long way off assessment stage (60 wks away). Was basically told to keep reading more about autism and trying different things. I feel there is no real support to be had. Diagnosis will not change anything. I know this but she is unmanageable now!

staydazzling I know what you mean about picking your battles. DD is relentless with her demands of unrealistic things she wants or will want to avoid (I don't and have never given in) no calm diversions, distractions or molly coddling etc works. It's like waiting for the explosions that I have no way of stopping, bloody torture isn't it and I'm sick of walking on eggshells.

putyourbackintoit that must have been so scary when your dd did that! It's good to hear that this summer has gone better for you than last year. You're right though, it does feel so lonely and I feel very much judged from neighbours, other parents and teachers who are not on board yet :(

Reviving this zombie thread!
If any of you still use mumsnet you may see this and I'd love to hear how you are all getting on.

I was just googling PDA support after a horrific week with dd13 and found this! Bit depressing to see my past posts from over 4 years ago and life not much improved 😩. DD got diagnosis of ASD, 3 years ago. Had 16 months not in school after mainstream secondary went spectacularly tits up. Took most of this time to get an EHCP and find specialist provision that she started last month.

Dd will be 14 in a few months. Her meltdowns are somewhat less frequent but extremely violent, dangerous and due to her size and strength, now difficult for me to manage to avoid her harming herself/me/smashing up the house.
Not sure where to turn next. Wondering if it will become a need for me to explore her having some kind of medication cause life truly can't carry on like this, I'm burnt out 😪

@xxlostxx I'm so sorry to hear you feel life hasn't much improved. I hope the specialist provision heralds new change?

My 8 year old son has a diagnosis of ASD + PDA and we have had a pretty soul-destroying time of it, ramping up these last 6 months with exclusion after exclusion at school to the point where our hand has been forced to remove him completely... Because what other option is there? The exclusions make his anxiety and then the behaviours worse, it's a downward spiral. And the school can't seem to take this on board. He has not trust in them and tbh nor do we anymore. EHCP is being updated this week but I may as well tear it up and throw it around me like confetti - it feels so useless.

Just so much despair. Send the Social Workers in! If they're is something anyone can do to help us I'd be open to it.