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. ??

Hi OP

You might get more of a response in SN Children: www.mumsnet.com/Talk/special_needs

Sorry I don't have any experience but I know enough about PDA to know that must be incredibly tough. Have you come across this site? www.thepdaresource.com/pages/pdfs_books.html

Hang in there, I'm sure you're doing a great job.

thankyou i might ask for it to be moved

Agree with Bertie, the SN boards are best for questions like this

If you report your own post, MNHQ can move it over there.

We've moved the thread now.

thankyou v.much x

Hello

My DS is autistic with a very demand avoidant profile.

Have you read The Explosive Child? We found the strategies in this to be very helpful.

Plus, all the usual suggested things like using humour, making it a game, not directly saying no or making a demand. Leaving plenty of time so I don't get stressed if rushed.
Letting him choose when he does things (like - we're going to do x today, but you can choose when you do it). Too much choice is not good tho - he can't cope with that.

Incentives don't work that well, but distractions do (audiobooks have been a life saver for car journeys for example).

Avoiding busy crowded places - DS like to run free in nature.

Internet shopping!

Knowing when to say no to stuff that I just know he won't cope with (even when I feel I will be missing out, eg spending time with a big group of friends. He can only cope with 1/2 children at a time, and even then he needs a place he can go to escape to).

In some ways life has got easier as DS has got older (altho different things have cropped up). He's due to start special school in September (altho he's not behind academically he's so so demand avoidant at school he really needs the expertise of staff who know how to work with PDA children, plus small class sizes and access to extra curricular / enriching activities that just he can't access in mainstream school, even with full time 1:1).

This probably isn't that useful to you - maybe if you give an example of the kind of things you would like some ideas for?

But you are definitely not alone. There are some good PDA groups on Facebook.

I won't lie - some days I have endless patience and those days are easier. Some days tho I don't / I get it wrong and those days can be tough.

DS is ultra controlling over my younger DD too which can be hard during the holidays (it's fine when she feels compliant to go along with him, but not unfairly she doesn't always want to!)

Actually - one thing that helps us is I still do lot of stuff for DS - like put his clothes on, shoes, clean his teeth. He can do it all by himself but if I ask him to he'll refuse (we had a stand off over teeth recently when he wouldn't brush them but then collapsed wailing that he was terrified that his teeth would rot. It lasted a long time. He basically boxed himself into a corner with his own demand avoidance!).

That was a lot longer than I meant it to be!

Oh he's 9 - meant up say. Age 5/6 was v tricky I think because I felt very alone - it was easier when school really got to grips with PDA (he got a EHCP last year). Plus DH listened more when it wasn't just me suggesting things (DH used to butt up against him so much - he still does a bit, but it's better)

Will watch this with interest. Dd (13) has just received a diagnosis of Aspergers PDA is that the same? We’ve had 9 years of hell :(

Thanks for replies, im glad to hear youve got a dx now but sad to hear its too so long for some of you with ds being 6 i fear a long road ahead. Ive also heard terrible horror stories about Cahms,which is worrying me aswell. My DH is away often ,which leaves me alone with no respite which sadly at times causes me to become very ill. Its just all too much that book "the explosive child" sounds interesting i shall have to search ut out.

DD (9) is currently starting asd assessment through camhs, we are right at the beginning of this but we've had years of hell. Everything is a battle and we (ds 11 and me) are on eggshells constantly.

Everything has to be tailored around dd to prevent meltdowns and she has got progressively worse these last 12 months (meltdowns are now violent, attacking me, breaking things). I have no support (absent father) and long for these hols to be over. I work term time only and can't wait for September to get back to work for the break!

PDA is not diagnosed in my county but DD matches the profile completely. I did start reading the Explosive Child a few months back, must give it another try.

I've no advise other than to keep trying different tactics. I am getting more and more adept at spotting dds triggers, but to be honest, there are so many of them that it makes everyday living extremely difficult.

Would be interested too to hear from anyone who has found ways to make life more bearable with their asd/pda child. I fear life is just going to get more and more difficult

Oh goah xxlostxx big hugs its such a relentless drain on the family it must be so hard being a single parent with this, and working i take my hat off. You must be so efficient

The Explosive Child is a great book

I also found this one really helpful

www.amazon.co.uk/Understanding-Pathological-Avoidance-Syndrome-Essentials/dp/1849050740/ref=mp_s_a_1_1?ref=plSrch&keywords=books+on+pda&dpPl=1&dpID=51DJSn8xJyL&pi=AC_SX236_SY340_QL65&tag=mumsnetforum-21&ie=UTF8&qid=1533593231&sr=8-1

m.youtube.com/watch?v=jvzQQDfAL-Q

This is the first in a series of videos by the explosive child author. The next in the series should show up under the first video and so on. DH isn’t a reader so watched these instead of reading the book

My best tips are to be massively flexible, I am even more so when my DS is being very inflexible, to look beyond the outward behaviour to what’s driving it (usually anxiety/distress/need to feel in control to reduce anxiety) and respond compassionately, and to really only pick battles that are necessary. Showing even the slightest irritation is a massive trigger for DS so I have to appear very calm and relaxed as much as is possible. A lifesaver has been finding another mum with children like mine-they play brilliantly together most of the time and my friend isn’t shocked/upset/bothered by DS’s behaviour and doesn’t react when he’s losing it. That helps enormously and allows me to not be on edge when we’re with her and her children

Thankyou v.much untameable shrew so helpful, its the constant rudeness i struggle with the most atm its the most embarrassing aspect i suppose and my asperger ds is so placid and calm in comparison

Just fell down a dr ross greene rabbit hole

I hear you about the constant rudeness, it’s very wearing. I try and let it wash over me most of the time but occasionally snap and say I’m fed up with it. I’m quite glad it’s the holidays so I don’t have school mums looking aghast as DS loses it with me after school every day. I don’t know about your DS but mine takes a while to decompress in the holidays so the first few weeks he tends to be more oppositional before he chills out. Last summer was 6 weeks of decompression but this year seems better as I pulled him out of some of the nightmare end of term “fun” activities/concerts etc which has definitely helped

Yeah definitely the judging and sense of shaming makes it much much worse,

Im finding the holidays a difficult time

How old is your ds theuntameableshrew ? Yes, the rudeness is very hard. DD does it in shops now, totally not bothered who is looking or listening. She comes across as just a spoilt brat. And to make matters worse she lashes out on me too if things not going her way, pinching /kicking me. It's all just so mortifying.
As much as I can't wait for these hols to be over I'm dreading September too. School became a real problem for her the last few months of term, saying she has no friends etc and I had a real battle every morning getting her there & a nightmare every night for hours on end. She's already insisting she's not going back.

And yes, the sense of shaming. I know it looks like my dd is from a stereotypical single parent family and she's just running rings round me . People don't understand do they? And you do get a sense of smugness from other parents who's children don't display all these behavioural problems. I'm finding it really isolating at the moment and trying to keep things as low key as possible these hols, not arranging big days out with other children as it just doesn't go well at the moment.

lost my DS is 7. He has been known to not only be rude to me but also to people who come to the door. He’s told the dog walker to fuck off before and said “there’s a really fat man at the door” (a friend bringing me a present). SO so embarrassing

Does yourDD have an EHCP lost? Is there any way you can befriend another parent with a child who is similar? Most of the smug parents want nothing to do with us at school (meaning DS2 who is a year older also misses out). Everyone knows he has SN because he has a 1:1 and I’ve been open about things anyway. I have let a lot of nastiness from parents go but do now refuse to speak to one school mum who was absolutely vile to me and DS one day. Other people can be such a nightmare. I haven’t spoken to my mother in over 2 years as she does not accept DS is autistic, he’s just naughty apparently. Ironic because she is massively demand avoidant and clearly autistic herself

for you, things sound very tough right now

Oh my god xxlostxx are you me from.a parrallel universe but with a daughter instead? had a horrific day so far and its only lunch. He has major obsessive compulsive issues with food , i need to decompress it all ill post it later in more depth.

We are just at the start of assessment process theuntameableshrew so no EHCP yet. I think many other parents just have no understanding do they? Unless you have experience first hand of ASD behaviours, it's assummed a child is just spoilt or not managed properly.

That must have been very upsetting to not have support from your mother or acceptance and understanding about your ds. My parents are not very understanding, dm likes to look for blame (dd is just like her father is her favourite mantra, she is from a large family and 'none of them were like dd' is another). Or I've favoured ds and need to stop 'scrutinising' dd looking for problems DF is more understanding thankfully.

staydazzling hope your day got easier yesterday.
Dd's diet is very limited. She would live on white carbs. Chicken nuggets is just about her only form of 'meat'. Nothing on sandwiches except butter so packed lunches for school are pretty embarrassing.
She was a nightmare to wean. In fact even bottle feeding was difficult.
Apparently she would eat if she lived in a certain other parents house though! I find the helpful little tips from clueless other mums so patronising!