It was the first May bank holiday here in the UK last weekend and with that came some expectation that they’d be family gatherings, weekends away, friends round for the first BBQ of the year. For all of you that did those things (and more), we hope they were wonderful and the sun shone for you 🌞
These sort of events are hard for us. Breaks from routine, being away from home (safe space), different smells, different sounds, different people, lots of people, people we might not know well…. (the list goes on). They’re all stress factors for our eldest son and, I believe, our youngest son too.
We decided that the boys being home over that weekend was best for them right now, but my partner Adam went away for two nights. This can still be a very challenging change for our boys. It means our routines, which we have to help them feel safe change and, even if that change is expected, it causes anxiety.
After daddy left, as the weekend went on, T and O started to exhibit more and more signs of being in survival mode.
In our house this can look like:
- Lying on the sofa in the same position, almost completely paralysed.
- Lashing out at each other or inanimate objects.
- Hiding in their favourite spots (behind chairs, in the sensory den)
It’s really important for us to understand what causes survival mode to kick in, because otherwise we might misread these reactions.
So…..Survival mode…..
As Humans we have natural instincts that kick in when we feel threatened, to help us survive. These are often referred to as the four F’s:
- Fight
- Flight
- Freeze
- Fawn
I believe that the behaviours I was seeing last weekend can all be attributed to an F word:
- FREEZE - Lying on the sofa in the same position, almost completely paralysed.
- FIGHT - Lashing out at each other or inanimate objects.
- FLIGHT - Hiding in their favourite spots (behind chairs, in the sensory den)
Starting to understand that these sort of reactions are due to the boys being in a state of survival has made it much easier for us to understand what we can do to help manage our own reactions and/or look at triggers.
The boys do present some reactions that signal fawning too, but this seems to be much less frequent in our home. Outside of our home, I believe we see it a lot more and it is often mistaken for the boys being ‘fine’ (whatever that means). Sunshine Support have written a great piece on Fawning and Masking, which can be found here:
https://sunshine-support.org/masking-and-fawning-our-survival-instincts/
If the boys are playing together and trigger each other, T will usually present with a fight response, where Oscar seems to opt for flight. It can be really interesting to watch people’s reactions to this, as well as our own, because a flight response is non-violent versus fight, which is often violent. It’s really key for us to know that they both need the same reaction - kindness, compassion, comfort, patience and reassurance.
Being aware of these responses for T is paramount, as we believe heightened anxiety, associated to being in survival mode, can mean that it becomes even more difficult for him to listen to the internal demands that keep him healthy. The ones that others might take for granted, like the ability to eat, drink, sleep or use the toilet.
Avoiding the F word
T is a PDAer (PDA is Pathol Demand Avoidance) which we have learnt means his nervous system is likely in a constant state of arousal and, as such, is likely to trigger these natural survival instincts extremely frequently. This could be multiple times in an hour, for reasons people outside our four walls would perceive to be quite small or maybe even insignificant. O waking up from his nap and coming downstairs, for example, is a transition for T and can trigger a threat response.
To try and support T we are changing the way we approach parenting and, in many respects, how we live, so that, for example:
- We pick our battles.
- We collaborate and try to explain as much as we can.
- We are learning to use different language and make less demands.
- To help manage anxiety, we have routines to promote a sense of safety for the boys through predictability and we try not to do things unexpectedly for the same reason.
- We are careful with sensory stimulation (noises, lights, smells) to try and ensure their environment isn’t adversely impacted.
- We plan 3-4 days ahead (to help with anxiety), but are careful to be flexible if we need to be and always have a plan B.
- We stay home if we need to and we build in plenty of recovery time into our plans.
- We try not to be in a rush for anything and accept that it may take us hours to be ready to leave the house.
- We give the boys choices, enough to give them a sense of control, but not too many that anxiety increases (a very fine balancing act that we are always refining).
It is hard to be away from home, where the environment is different and our routine is invariably different. The adjustments that we are trying to use cannot always be supported. Therefore our children feel less safe and more anxious. Their natural survival instincts are triggered more frequently.
The adjustments we are making seem difficult for people to understand. Often people think that we should be pushing our children to ‘cope’ with the ‘real world’ or that we’re depriving them somehow. These views seem totally counter intuitive to me. We have time, we can live with these adjustments, we can take baby steps instead of giant (unsustainable) leaps and we can be led by their needs. We should be led by their needs.
The PDA society have created a great infographic, with a PANDA mnemonic, as a reminder for helpful approaches to supporting PDAers:
https://www.pdasociety.org.uk/resources/helpful-approaches-infographic/
The only thing that we have found which is different to what’s presented on this infographic, is that T’s anxiety is lower when we have routine. Changes in routine really increase his anxiety. We have tried to take a more person centred approach in everything we do and our routines are built around what we believe adheres to his, and O’s, needs.
We are still learning, we will always be learning and our boys will be growing and changing as we learn, so what works today might not work tomorrow, but that’s okay. We will do what works for us today and we will adapt when our boys needs change.
For now, we can’t do all the things that are typically associated with an English bank holiday, but that’s okay. Our boys aren’t missing out on life, our lives are different and different is not less. One day they might be able to do those things, they might not, we will wait and see and be guided by them 💜❤️
