I wrote this blog during the pandemic when my son was still school age. Its only a year ago and while the nature of the demands have changed, I haven't altered what I have written, preferring to keep it in present tense.
Another weekend with a plan to have no plans. Earlier today I was sitting in my pj’s contemplating leaving my room and grabbing breakfast after a much needed lie in. I knew I needed to muster together and take the dirty washing down, load the machine and have a shower but I avoid all this by checking social media, answering a couple of emails and reading blogs, sitting on the sofa with a cushion over my bare feet to keep them warm.
Weekends are always the same. I never make plans for the weekend and have kept this same pattern for many years. It’s almost like I don’t have to do anything only the tasks I set for myself. The needs of others be it work, mum duties, carer duties, friends, things that I am bound to do or complete, are scheduled in from Monday to Friday. Come the weekend only the bare essentials are met as I put my own needs first.
I see others (more so before the pandemic) with massive plans for the weekend such as shopping or meeting friends, family days out, nights out. For a long time I was envious, wishing I could be like that person, but now I think rather you than me. I take great pleasure in answering “nothing” when others ask me on a Monday if I got up to anything at the weekend.
It wasn’t always like this. Saturdays used to be a shopping day or a cleaning day or take my son out day but I’ve realised that with my son and his PDA, over time those things have changed.
Pathological Demand Avoidance (PDA) is exactly what it says on the tin. Those with the diagnosis pathologically avoid demands. They can’t help it, their brain is wired a different way; it is neurodiverse. My understanding of this is that the demands of life can causes anxiety at a scale so much higher than the neurotypical brain, meaning everyday requirements cannot be completed or met.
Simple everyday demands that the rest of us accept and do (albeit grudgingly at times) can leave the individual with PDA feeling that they have no control, creating even more anxiety. The more anxious the individual, the smaller the chance of them meeting the demands.
To explain it I often use the speedometer on a car. My son can get up in the morning and his tolerance to demands could be sitting at 60 mph. On those days he is more willing to meet the demands or tasks set by him or for him e.g. school, household chores etc.
On a day where his tolerance sits at 30mph and attempts are made to push it beyond what he can manage, avoidance begins and there is potential of a meltdown.
I cannot predict what his tolerance levels are on any given day until I test the waters.
It kinda explains how weekends are in our house. In fact it explains almost everyday in our house.
The pressures and demands from outside the home impact inside the home and vice versa. If I know he has had a hard day in school then the demands at home need to be low. Since he received his diagnosis and I researched the condition, we try to keep them low in the hope that less demands in our home mean he can manage to do more outside of it.
If I know he has been doing his best to meet demands all week, then demands at the weekend are a no go. I’ve learnt not to plan anything, Even if it is he who makes the plans, these can fall to the wayside as he no longer has the capacity to follow them through, even when it’s something he’s really been looking forward to. He will use excuses e.g. I don’t feel well, I’ve lost my books, I’m tired…. the list is endless.
Over the years he has even made plans to avoid other plans e.g. a trip to the dentist was replaced with ranging his granda and arranging to take him shopping. The first I heard of these plans was when my dad rang me to ask why we weren’t there yet. His need to be in control and avoid certain things has been so strong at times that it has been manipulative. On another occasion he didn’t want to go swimming with the school so he turned the alarms off in the hope that we sleep in. Yes that seems like a controlled action but if you had seen the anxiety, heard him crying and witnessed the meltdown, you might think differently.
Does he have an awareness of it? Not when he was younger. Now I think he has a better understanding of his condition.
The hardest part of it all has been other people. They love to give advice on how I should be parenting. Don’t get me wrong, I’m not perfect and there are times I’ve made a rod for my own back, giving into something or letting him away with things all for the sake of a quiet life, but I simply cannot parent the way others do at the best of times. I have a sister who no longer speaks to me because she didn't like my parenting style. The best of it is, she isn't a parent herself and works in a CAMHS unit. Take from that what you will lol.
Parenting a child with PDA is hard. The usual methods don’t work. Instructing my son to do something or setting rewards or ultimatums are yet more demands that have to be met, creating further anxiety and less chance of it happening. If I did find something that worked, it only worked for a short while until he started to avoid it and we had to change tactics.
Everything has to be worded or done in way such a way that it seems like he has a choice. “Take the bins out please” usually gets met with an “in a minute” and it never happens but “would you rather feed the dog or leave the bins out?” means that he chooses and will do it, usually in his own time.
We separate things out in a way that grades the demands placed on him.
The ‘must have’s’ – these are the things in day-to-day living that he must do e.g. get dressed, go to school, eat his meals. Some days these are harder than others. Some of these were easier when he was younger e.g. school when he was small meant I could lift him and bundle him in the car. School also had less demands when he was younger. Now he is older he is never in school on time. I can’t lift him any more but if I lesson the demands he will get there, eventually (as long as there isn’t the threat of detention or a disgruntled teacher).
The ‘must have’s’ are also the things that I shout about and insist upon. On these I set consequences. Over the years it has been no DS, no PlayStation, removal of a phone for 30 minutes (the diagnosing doctor recommended no longer as it means we could remove the item again during the span of the day if required). Now he’s 18 consequences are usually centred around money. Money he needs for petrol now that he can drive.
The ‘working on’s’. These are the things that he still needs to do but it’s taking a while to get there. Some days it happens and others not depending on his tolerance levels . Homework is currently one of these, especially as he isn’t in school thanks to the pandemic. It has always caused major anxiety and a lot of stress. He has never willingly did his homework and in primary school the deputy head actually suggested that we stop doing it due to the stress it was causing both of us. Now doing his A levels he accepts that if he wants the grades it has to be done but he never meets deadlines. Why? It’s another demand of course.
The ‘let go’s’. These are the things that aren’t worth fighting over in life. The term ‘pick you battles’ applies here. I don’t want to always be fighting with my son. Some things cause so much anxiety and meltdowns that we have to let it go. In his last few years of primary school, homework was one of these. His language is another, especially when anxious. Some with PDA can use very choice language. He is one of these individuals.
Some things will move between the three. What is essential at one point will no longer be essential at another. Our list of ‘must have’s’ has grown over the years, partly because he is accepting that some things in life need done, others are no longer important as he gets older and decides what he wants in life,. Our list of ‘let go’s’ changes too.
Reflecting on this, I know I am one of the lucky ones. Up until he was 8 there were 3 in our home, me, him and his dad. His dad left the parenting to me for the most of it, mum knows best kinda thing. When I split with his dad it was just us, I wasn’t caring for other children and trying to meet their needs to the same time. I could choose to manage our home and lifestyle to suit my son’s needs.
Our story is just one example of living with PDA. There are those who cannot attend work or school, who simply cannot manage the demands of life through no fault of their own. There are those that can although it can take its toll to meet these demands.
The judgement of others is horrific and adds additional pressures. Only those who live with it can understand the stress and pressures of this condition and every day life.
I know that the views and experiences I have are entirely my own. There are others who will disagree or say that I am simplifying it too much. Some have even questioned his diagnosis, maintaining that he is just a spoilt child.
What I do know about my son is that he is a kind, caring individual, extremely funny, popular and capable of so much. These are the things I choose to see in him, even when times are hard and the PDA is a nightmare to live with.
If you have a loved one with the same diagnosis, I hope you take comfort in what I have written. It is hard. There is very little known about the condition. When my son was diagnosed he was only 1 of 6 in the whole of N.Ireland and his teachers knew nothing of it.
I know that they are still refusing to give this diagnosis out in some areas of the UK. The research continues and I continue to hope for a better understanding of PDA and how it affects the individual and their loved ones. If you feel like you wish to share your experiences in the comments below, they would be most welcome (that's providing this website allows comments as I haven't worked that part out yet lol)