The internet is a wonderful tool. If it wasn’t for the internet I wouldn’t have known about Pathological Demand Avoidance or even heard of such a thing.
For us, we found something that fitted our son so well with strategies alongside to help us and help our son.
It seemed a little like I became the child psychologist trying to work out how my son’s brain worked to reduce demands and working out a way of communicating with him to reduce his anxiety. If I could crack this and change my way of communicating I believed we could have a happier boy.
Teachers and other professionals tried to work out how to change our son with a number of different strategies but none worked. No one seemed to think about changing the way they acted to get the outcome that we all needed to see which was a boy that was happy in himself.
My first steps to understand PDA was to join our local PDA group in Yorkshire to meet families who are going through this, ask them what works and what doesn’t work. Of course, every child is different but we would try anything to help. I felt as parents we had a boy who was more frustrated than ever happy. We could never understand why? We would give him the world. But possibly it was us all along? We never knew how to communicate with our son in a way that he needed. We had to learn, we had to change our ways – not expect him to change his ways.
I learnt from books that trying to reduce the anxiety of everyday demands was a must to help keep his anxiety under control but to be flexible and to slightly increase the demands on days that my son appears to be able to tolerate them more. I find that it’s an ongoing learning curve, it’s never a simple list of strategies that just work, don’t get me wrong there are strategies that always work and are ongoing which we will always use but from time to time these strategies need renewing.
It was key to use negotiation, discussions or compromising.
It was hard for my eldest son to understand why his younger brother seemed in his eyes to be getting away with things. Even at the age of 16 years old he still sat shocked at the way we would negotiate with our youngest. It’s hard for him to understand sometimes as even at 16 he is still a child, a child that is growing up to be a young man that has lived with rules, consequences and a completely different parenting approach. Possibly another blog about siblings on the arisen.
So going forward the strategies that we follow religiously most days are the following:
- Reducing demands
- Staying Calm
- Choosing Your Battles
Distraction is used a fair few times, what I mean by this is we use distraction when we know that our son is not going to back down, he thinks he is right and that is it! We learnt very quickly that if we continued to argue the result was going to end up in a meltdown, remember he wants to feel in control of the conversation as these are his PDA ways. If I can sense that his anxiety level is high, why impact on this? Pick your time to explain your point of view later in the day. Distract the conversation a different way and come back to proving your right when you know you can. Distraction has worked just before meltdown mode for us a fair few times.
For example – My son has an obsession with computers and technology, we were waiting for a cable to arrive for a retro game console. The cable was due to arrive today, it was nearly bedtime he realised it wasn’t here. Most children would be able to accept that certain things are beyond our control, which we have tried to explain numerous times but not our son. If the app on dads phone says a delivery time, that’s the rule which should be followed. We know at this point it is highly unlikely to arrive before his bedtime, so we choose to distract him with something else in the hope that he will forget, it would need to be around the conversation of gaming funny enough but something completely different to think about. We cross our legs, hands, fingers, everything in fact that it arrives tomorrow!
Distraction was used a fair few times back in the day when he was in mainstream school, I often would email the senco throwing her some You Tubers names that he was possibly fascinated with at the time. It worked sometimes, more so in the calming downstage of the meltdown for our son.
This is a simple one that you learn with just a little thought!
- Get up
- Get your clothes on
- Wash your face
- Brush your teeth
- Eat your breakfast
- Get your shoes on
These are just a few examples of demands that could be thrown at your child in the first hour of them opening their eyes.
Again you need to figure out what type of mood your child is in, is the anxiety low or high?
High anxiety I would offer more help and give choices. I know on a school morning my son’s anxiety may possibly be higher than the weekend. His clothes would be visible for him to change into. On a weekend I give him the flexibility to choose his own clothes in his own time because we are not in a rush over the weekend. Oh did I mention a rush? I am always rushing around but my son will never be aware, if he thinks we are in a rush this is like showing a red flag to a bull!
If I know his anxiety is still high I would offer to help get him changed, it’s not about giving in to him or not giving him the responsibility its about choosing your battles which I will come onto shortly and keeping the anxiety levels at bay when we have a time limit to get out of the door. If I know anxiety is down, my son wants to get dressed I may move his clothes into my room and we will get changed together.
Next is brushing teeth, for a child that has sensory issues isn’t the best task on a morning, again flexible on a weekend, give choices when would you like to brush your teeth? School morning this demand needs to be done quicker, if anxiety is low he may brush his teeth without me asking. I will put his toothbrush on the side with toothpaste on, he will pick it up and brush! Simple! If anxiety is high I will offer to help, “Would you like mummy to brush your teeth or are you doing them?”
Breakfast – Tricky one! After that many demands which seems a lot to deal with if we are having a high anxiety day, we may possible bag it up and take it in the car this is giving him the control of when to eat it he is not feeling the pressure of being rushed. We have our days as a family sitting together at the table, but these are at times when anxiety levels are lower. Low anxiety days I will leave his breakfast on the table and he will sit and happily eat. Eating in his own time and full control.
Thinking back now about what our mornings used to be like compared to now feels a million miles away. He is waking up a happier boy with fewer demands placed on him in the morning and fewer demands placed on him at school which has made a huge difference.
In my head, I am clock watching and rushing around to get everyone in the car on time. Little do they know.
Wow this is a tough one, I remember the day we took a different route home to go to the fish and chip shop, I hadn’t pre-warned him or gave him a choice so we had a major meltdown in the car, our car was new we had never owned a new car before so it was pretty precious to me. The seats were being kicked, the middle glove box and fan was smashed up. Don’t shout, it’s going to make this worse I tell myself, pull over and offer a cuddle. We did just that. Later that evening he felt so sorry this was the time when we could talk as he was ready to talk, anxiety lowered. We spoke about how many pennies it was going to cost to be fixed, he understood. It is so hard to stay calm. I have spent many minutes behind a closed door in tears taking a few deep breaths. Giving each other a little space if you can helps, sometimes not possible but the key is to always remain calm. The minute you show levels of high anxiety your only raising your child’s anxiety levels higher.
Choosing Your Battles
Some parents would look at our way of parenting as bringing up a spoilt child, allowing them to make the choices. I wish they could step into the shoes of a SEN parent. You need to choose your battles.
People may question why we are allowing our child to use a device at the restaurant table, we know it is to keep his anxiety levels down due to the noise in the restaurant, he has many sensory issues. If the device is allowing him to block out this background in a small way we are able to go out as a family for a meal.
People may question why I am not forcing my child to eat with his knife and fork every time he is at the table if he is managing to eat with us as a family and happy why not. I may ask or prompt that the fork is there but maybe getting him up to bed is a bigger battle so let’s save this one!
My son faces battles each day, battles that no other child may even go through, so choosing your battles to keep that anxiety level low the majority of the time helps.
I hope some of my strategies may help with your journey.
My son’s anxiety levels over the last month have been lowered 80% due to his move from mainstream to a specialist school. I have a different boy at the moment but I am not saying high anxiety days won’t come back and bite us on the bum, but hopefully, now we understand our son, even more, we can help him by us changing our ways.