What would you do?

I’ve been trying to get Little C mixing and socialising a bit more but he’s quite resistant. We are starting slowly with a new group this afternoon where there will be just four children, all with SEND. I haven’t told him yet as he’ll likely build it up too much and then say he doesn’t want to (can’t) go. I’ll gently spring it on him nearer the time and hope for the best.

I wanted to talk about low-demand parenting in this post (there is a full post about it here https://thepdaway.blogspot.com/2022/04/parenting-pda-way.html  where I give examples etc). I know some people don’t get it and think it’s lazy parenting. When I hear people have made comments about how we do things it doesn’t anger me (anymore) but it does play on my mind a bit and makes me want to explain it further. Ideally to them face to face - but via my blog will have to do. 

Just imagine for one minute that your child hates school. Is terrified of school. To the point where they feel they might die when they are there. They’re not able to explain why, it’s just a very extreme fear. 

Imagine your child feels this same level of fear every time you place a demand on them, no matter now small. They fly off the handle in total panic every time they feel they ‘have’ to do something. They don’t know why and they can’t explain it. Eating. Bathing. Learning. Tidying up. Getting ready for bed. Going to sleep (yes even sleeping is a demand) 

It gets to the point where your child is living in a constant state of panic, all day every day, waiting for the next demand to be placed on them. They are scared of absolutely everything and it’s seems to be for no apparent reason. They are losing weight. They are exhausted and not leaving the house.

After a year …two years…three years of watching them struggle with the simplest of tasks. 

What would you do? 

You remove all demands that are not absolutely necessary. It’s as simple as that. Then you slowly build back up from there. 

This is PDA - pathological demand avoidance, a profile on the Autism Spectrum. The extreme demand avoidance feelings are all in addition to ASD difficulties such as sensory differences which are in turn massively heightened due to the constant state of panic. 

I don’t expect everyone to understand or accept our way of parenting and I’m sure conversations will have been had around how we ‘give him too much control’. Until you’re in this situation, unless you’re living this day after day, you have no idea what needs to be done in order to live and function.

Little C needs to have a high degree of control and we allow this where we can. He needs to have the option to say ‘no’ (this makes it much easier for him to do things). So yes, to some people it will look like he is controlling us. It’s supposed to! 

The PDA won’t go away and many people will say ‘how will he cope in the real world?’ I don’t know is the answer. I can only live in the here and now, the future is just too big of a worry for me to consider right now. I will say this though…maybe it’s the real world that needs to change somewhat. 

He is however starting to understand and accept that some things cannot be accommodated. At one time there would be a huge outburst if his dinner wasn’t made right away at 10am! But now he will accept that it’s a bit too early and let’s get dressed and play first then we’ll have dinner. That is progress. He is now able to wait longer for things and show some patience. It doesn’t come naturally to him but his brain is re-wiring and the things he is learning are sticking.

He laughs too. A lot! That is progress!

As he is happy and not living in a state of panic, he is now able to adapt and learn. So we are now able to make progress in areas like eating, diet etc. We have a long way to go but he couldn’t have even begun to learn anything living how he was before. So this is progress. Yes he’s still in nappies and yes he doesn’t leave the house much and can only brush his teeth for ten seconds….but he had his nails cut last night without batting an eyelid. Twelve months ago he was screaming in the corner of the room, crying hysterically begging me not to cut his nails as he was afraid he would die if I did.

So I guess I’d really like to end this post by saying that if you see people doing things differently with their kids over the summer holidays, please just stop and think. Imagine it was me with Little C. Imagine it had taken months, or years to get to this point of getting out of the house. You just don’t know the story so please keep an open mind and if you see a parent giving in too easily to a child, or doing things that you might think is lazy parenting, there might be a lot more to that story than what you can see. So please, just try not to judge. 

Hope everyone has a great summer holidays - no matter much or how little you do. 

(By the way, you can now comment directly on my blog - I didn’t realise I’d had this feature switched off 🙈)