If you are living with a PDAer you will know all too well that even when things are running smoothly, this life can be exhausting. It is something that others can never fully understand unless they have lived it. Preserving and prioritising where to spend your energy is key.
When we consider all the things that impact your child’s tolerance levels…sleep, hunger, thirst, temperature, sickness, fatigue, environment, people around them, sensory input, the amount of structure, autonomy, pressure, expectations and demands.
…And then we combine that with the cumulative effect of stress that occurs across days, weeks and even months, it is easy to see that your child’s ability is going to fluctuate based on how much energy they have available to them. They might be able to cope with something one day but have a complete meltdown the next. School might go fine for a year and then completely fall apart. They may look very competent at home but become completely disabled in other settings or vice versa.
PDAers can be exceptional maskers. The extent of their struggles is often hidden from those around us.
What others don’t see is the amount of energy that goes into getting somewhere, in trying to make sure that the outing will be a success. They don’t see the aftermath when you get home, how completely drained your child’s energy levels can be.
What others don’t see is just how depleting it can be on you as a carer when you’ve had a bad day, when you’ve tried every trick in the book and still haven’t been able to get out of the house, when you’ve made it out but have had to leave early, when you’ve encountered the unexpected and had to use up every last ounce of energy helping your child through a public meltdown.
What others don’t see is just how sensitive PDAers are to the energy of people around them. Their neuroception picks up on the tone of voice, facial expressions and body language which can easily trigger their stress response. They can also tell how comfortable you are as their carer around different people. If you are uncomfortable, they are going to be uncomfortable too.
What others don’t see is the huge mental load that comes with having to co-regulate with your child 24 hours a day. The amount of energy that is required when you constantly live in a state of hypervigilance. Living with a PDAer is like doing mental gymnastics, you are constantly having to negotiate, be flexible, and consider your every move. There are no sick days.
What others don’t see is that sometimes you just don’t have energy for other people. All of your energy is used up keeping your kids and yourself calm enough to get through the day, you can’t deal with other people too.
Sometimes preserving energy levels means having to weigh up if the benefit outweighs the cost. You get to choose how you allocate your time and energy. You have permission to say “no”, to opt out, to be flexible, to cancel, to change your plans, to be particular about the conditions that will make it possible for you to attend and for your child to participate. You are not being difficult or flaky, you are being attuned to your child’s needs. The ripple effect might just be that in the process, you are teaching others about acceptance, compassion and inclusion.
