Pda- how do I help my LO?

[Toddlersaurus]

How do I help my LO?

I suspect PDA is an element - massive meltdowns (reception aged, but these are not tantrums, it's a massive system malfunction, inconsolable- physically demonstrative etc).

We're trying a low demand approach but it's hard with a younger sibling and work/ childcare/school in the mix.

I just want to help my LO. I try to keep the connection, I try to give calm reassurance and keep everyone safe but I feel so helpless.

I'm trying to get help from school (mostly masking at school, it's me picking up the pieces at home) and I'm trying to meet other pda families locally but it's breaking my heart.

Following this thread, I think you may have given me the what I’ve been looking for, my daughter is 3 and has signs of asd / adhd but there’s something more there that I haven’t been able to put my finger on and pda would make everything click, the 3 things I’ve questioned is she has many triggers to everything, even being praised causes triggers, meltdowns and becomes violent towards anyone that is near her and there over little things but a lot to do with sensory to touch too, she is very sociable with strangers and becomes clingy with them and gets obsessive towards people and toys. Do these sounds like signs of it? We are currently trying to push to be seen by paediatricians sooner

She also acts the same at preschool and at home

If you want I can link to the PDA society, it might've helped me a couple of years ago, when people said it's the terrible twos and I just knew it wasn't.

I felt he's always been neuro diverse (sensory overload, labels, food - not just picky eater)

Mine ticks like every one of the traits below.

Mine is obsessive over two family members - one positive association, one not so much.

https://www.pdasociety.org.uk/life-with-pda-menu/adult-life-landing/adult-life-by-pdaers-landing/autism-and-the-pda-bits/

You may have already looked at them, but if not, some people find Yvonne Newbold’s resources helpful. Others find the books The Explosive Child and The Out of Sync Child useful.

Have you requested an EHCNA? What support is the school providing?

Has DS had an OT assessment? Some people find this booklet and this website helpful for sensory differences. Do you have any sensory toys/equipment?

Thank you for link, i would say she ticks all of those, My daughter gets obsessed with one person at a time, usually men but can sometimes be woman, she will follow and not leave there space, bounce by them, cry if she has to leave them, get in there face wanting there full attention, but doesn’t respond when they talk to her just bounces 🤦‍♀️ most of these are usually people she’s never met before, my friends one day she will be all over them the next not even bothered they are there, and the meltdown and high pitch shouting 🙄 far to many triggers. I’m going to talk to SENCo when there back at preschool, on my daughters latest report all of those symptoms are mentioned aswell as asd and adhd, I wonder if she already is watching for pda before bringing it up, she’s said there’s something more than asd / adhd but never said what

Dr Naomi Fisher is really really good on PDA, (1) Facebook
as is Eliza Fricker (1) Facebook
and the occuplaytional therapist (1) Facebook

@11plusNewbie thank you for these links they're exactly what I was hoping for x

@Crazyhouse4 maybe it will get easier to actually assess as she gets older - I found people just wrote off everything when ds was a toddler to him being 2/3 etc but as he's 4-5 it's becoming more apparent the needs he has versus a neuro typical child of his age.

Can be a frustrating battle to get heard - where I am every thing is over stretched and under staffed. Sounds like your preschool might be a supportive environment. My son's nursery was a not the right setting for him at all. School is a bit better but I'm still having to advocate for him/us . Xx

Give them choices(no more than 2)
Choose your battles and rules
Don't argue with them during or close to meltdown. During meltdown coregulate- slow your speech, give space, stay calm and say sth like (I see you are upset, having hard time, it's ok, mummy is here) it won't last forever.
Give them time to decompress-do whatever they want to do after and before school. They need this time for regulate themselves (google energy accounting)
Use declarative language, master indirect request. Use them all day everyday. There is a book called declarative language, you can also google it.
In our home school is not optional, homework is not optional, hitting/hurting is not acceptable, but he can leave a party early, if he doesn't want to go to x club anymore it's fine. If he doesn't want to wear coat/hat it's fine.
Humour is a great with Pda children.
They are good at reasoning explain why they need to eat variety of food, why they need to brush their teeth...
good luck.

Also, apply for ehcp, get them assessed.

Hi, just wanted to say I’m experiencing similar with my 3.5 year old son who is due to start pre school in sep, we’re having all sorts of challenges and I’m really worried. We’re starting the ball rolling on getting a referral for assessment but he copes ok at nursery and I don’t know if we’ll be listened to. I really feel for you, it’s so hard and I am an anxious type and can’t help but worry about the future. Books and resources are helpful though as at least you can try and understand and put strategies in place but it’s not easy!

I recorded videos of my son and showed one of them to the paediatrician during interview. She didn't want to see any other and referred him to multidisciplinary team assessment. He has moderate asd with demand avoidance, moderate adhd and mild dyspraxia and is absolutely amazing, goes to a mainstream school with high level of support but absolutely thriving. So grateful all the understanding and support we get from school, they use pda strategies and it works. The early intervention and awareness, support is the key. Pdaers are amazing given the right environment.

@mrsmiserable thanks so much for this - need to hear stories like this! This is why I want to try and get things moving now even though he’s still young, there is family history too and have seen what can happen when support isn’t provided. There is so much going on and I’m not 100% sure what it is (obvs not qualified to say!) but just going by my gut instinct which isn’t always easy to follow!

Just wanted to add pda is not in dsm-IV so currently not a recognised diagnosis. It's seen as part of autism. Both private and nhs professionals we have seen explained demand avoidance as part of asd. I have learned not to lower the demands but disguise them. Instead of saying "tidy up your room" I say " your room is so messy, I wish I had the energy to tidy it for you". He usually says "oh, I can tidy it" he was at a party last Saturday the host asked him if he wanted a margarita pizza or pepperoni. He was starving but said he is not hungry. He took it as a direct demand. A few minutes later the host asked "who wants more pizza?" He said "me me me" and grabbed 2 slices. His teacher, headteacher, all the staff use the same declarative language with him. I read somewhere in only 1 out of 9 children still meet criteria for extreme demand avoidance in adulthood because they develop their own strategies by the time they reach adulthood, also adults have more control over their lives so the world is more manageable for pdaers.