The more you give to PDA, the more you lose yourself….
- Katie Walker
- 6 days ago
- 9 min read
Updated: 1 day ago
For me it is the silent, unnoticed, emotional challenge that seems invisible to so many. It feels lonely and isolating.
I feel that if I were in a public place and struggling to push a wheelchair up onto a pavement, many would hurry over to help but managing PDA demands in public is something entirely different because the emotional challenge cannot be seen.
A friend recently used the analogy of feeling as if they would want to help carry the load if they could see that I was carrying a heavy backpack full of rocks. My question as a SEND parent is what happens when no one can visibly see the backpack full of rocks. What then?
Personally, I feel like I understand my children’s needs, all of them. From eating disorders, sleep disorders, social anxiety, sensory processing disorder and of course PDA, ADHD and ASD. Intellectually I can see all their triggers and behaviours play out, including the why, BUT every time I solve their problem, I create one for myself.
Every time I meet their needs, I get further away from meeting mine.
Every time I manage to emotionally regulate them, I am dysregulating myself.
The ‘mask’ that I have to wear as a parent can make me feel like a psycho. No exaggeration. A Psychopath! My children can be emotionally abusive, physically abusive or in meltdown and I have to approach the situation with the same upbeat but soft tone of voice, warm/open body language, smile and kind eyed approach I do with everything. Any wavering from this and it makes matters a whole lot worse!
I have been required to change who I am now to fit into their mould. Blocking my true ‘no’ responses and hiding my true authentic expression because it may create anxiety in the children. Overriding my natural impulses in parenting in order to accommodate my children’s nervous system and hiding my own emotions/tiredness is part of my daily existence.
When you constantly live this way of life, your own identity can start to erase.
-I can’t find myself anymore.
-Who am I?
-My sparkle has gone.
-I am not the parent I dreamed of being.
The anxiety I experience over the consequence of getting it wrong fills my day and my mind.
As PDA parents we all know that there is no grace or empathy given to us if we snap, if we are tired and grumpy, if we are frustrated or in my case running late most days with a rushed tone of voice.
Anxiety over the consequences can rule my world.
- I have to do x, y, z or else he won’t eat.
- I have to do x, y, z or else he won’t get in the bath
- I have to do x,y,z or else he won’t sleep.
- I have to do x,y,z or he will storm off and there are busy roads nearby.
- I have to do x,y,z or he may become verbally aggressive in public with other children around.
- If I push back, he will shut down and later have toileting difficulties.
- If I don’t accommodate his demands in the exact moment, this day out will fall apart, and he likely won’t leave the house again for a week.
- If I stick to my guns and force him outside today, he will be so anxious and dysregulated, I won’t manage the fall out.
Consequences in my world can mean basic needs not being met and dysregulation that can last a whole afternoon.
Weighing up the pros and cons (therefore constantly scanning for PDA threats for the children but creating anxiety in me) is a pretty big deal in my world.
If you are anything like me then you are not choosing for your child to have full control in many moments, you have no option that to allow it to happen, because of the fallout / the consequences. This would have worse outcomes for both of you. That’s not a nice position to be in. It can feel like choosing between two options, both of which aren’t your choosing.
Entrapment is the biggest feeling that will set off your own nervous system. Feeling entrapped into moments that you have no choice in is no fun and doesn’t help our own mental health.
You see when a nervous system feels it has no choice, it triggers the nervous system out of regulation and into survival which can lead to parental resentment, burnout, rage or shut down.
All of this dmotional challenge and still no one can see that backpack full of rocks.
Everyday my world is controlled by my children’s PDA.
Whether we leave the house today.
Whether I can work (depending on whether they go to school)
How much sleep I can get.
Who I speak to (yes this is a big one).
Who comes into the house.
My tone of voice.
My body language.
My facial expressions.
How I dress.
Whether they will stay with family members or babysitters (in the past).
They tell me what they will eat and when (eating on demand rather than set mealtimes).
Whether I can look at my phone, even if they are looking at their tablets.
Where my attention is.
Where I put things around my house (inevitably my choice won’t be liked).
Interestingly any nice things for the house such as fake plants and candles that I have purchased have been taken and used by the children or drawn on ( if I can’t have it then neither can you).
And yes, even though logically (because I understand PDA, autism and anxiety) I can see it is not personal and they are settling their own anxiety in each given moment, It feels deeply personal. Every time I lean into their control and I feel as if I am losing more of me.
A parent can literally be running their own nervous systems on fear and anxiety because they know that ‘if I don’t get this right, things can go terribly wrong and quickly’.
It can shape how we speak, move, behave, allow, leave us walking on eggshells, supressing own needs or needs of siblings in crisis management times; Giving up autonomy and trying to gain some level of external safety while all internal safety for yourself and children is almost non-existent.
It seems to be that living a low demand life and completing reasonable adjustments have taken my own life (over time), my own wishes, any fun, and any sparkle.
Over the years I look back and it seems my own family life has lost so much fun. The birthdays, Christmas celebrations, holidays, socialising, hobbies/clubs and exciting days out in the summer time seem to create so much anxiety. These celebrations or general days out are now interventions rather than special moments.
That’s a tough pill to swallow. The more I give to PDA, the more that gets taken from me.
All these adaptations, all this loss, all this isolation and grief and yet no one can see that backpack full of rocks.
The interventions that are PDA friendly seem to be unfriendly on anyone’s mental health whom is delivering them.
I can completely advocate for a PDA approach for our children, and I can first hand see the benefits. I can see that my Harry does eat better, sleep better, move through the day and complete activities with so much more control when he is met with nervous system regulations and a PDA approach. His basic needs become accessible. The meltdowns reduced.
But this approach takes something from me. It takes my own happiness and mental health. It takes my own basic needs of getting outside, enjoying days out with the children, enjoying celebrations or even the sunshine!
So how do we make room for PDA and ourselves? After 8 long years of experimenting, heres a few suggestions.
Reframing language:
Reframe the word control to safety and reframe the words meltdown/violence/aggression to anxiety or emotional regulation difficulties.
Reframe words such as domination, manipulation, power to predictability, safety and overwhelm.
(This does not take away or minimise the impact of these behaviours on your experience).
Something for only you:
Try and gain back control in little ways. Set the table for yourself! You’re worth it. Practice the mantra I matter too and model to your children that you do too. Taking 5 minutes is okay and teaches the children such. For me it is a facial (5 minutes before bed). I cleanse, exfoliate, moisurise and lay with cucumber on my eyes sometimes. It helps create routine, in amongst the crazy and unpredictable. I can rely on it happening everyday and it's something that is only for me, no one else. I do tell my children that in this time, I will not be answering to demands (unless important). Speaking outloud of your own needs will help them to build self-awareness and empathy. Try not to numb the difficulties with screen scrolling. Can you have your own space in the house that is just yours? A chair in the garden that you can enjoy a quiet cuppa? Can your bedroom be your own safe space, full of fabrics and colours that are pleasing to you? I love fabric sprays (don’t think Febreze - think coastal art shops selling local artists hand crafted fabric sprays). I purchase when I can and it reminds me of my favourite places. Gaining back control of your own body and space even in the most minimal ways can be a challenge but necessary.
Replace parental guilt with empathy for yourself:
Remember that every time you want to scream ‘no’ it is your body needing a rest. It is not lack of parenting skills or that you are a bad person. Give yourself grace. Journalling can help. Open the notes on your phone and rant as much as you can in here! You can even write ‘my kid is an arsehole’. You have to let out these feelings. This does not mean that you are a bad parent.
Start with low demand but don't stay there:
Take a PDA parenting approach but never settle on it forever. Your child cannot stay in low demand, nervous system regulated places 24/7. Yes, this is where it needs to start but then layering in demands when safe to do so is very important to ensure growth that is ability related (notice I said ability related not age related, age related is not a healthy framework to use with neuro diverse children. Focus on ability not age). For example, my son aged 9 will have me do all his personal care (getting dressed, brush teeth etc). On a school day I will manage this but on a weekend day I will challenge him to do it. Twice a week I will push for him to do his own shoes (only on days I have time to regulate his nervous system if it goes wrong). Sometimes, I will request 5 minutes before I meet demands because I may busy on something else, this builds his resilience slowly. Growth is always there. We don’t sit in low demand only.
Give yourself purpose:
Give yourself purpose, any purpose no matter how small. Writing a blog. Decorating a room the way you want. Setting a new fitness plan (even if its’ just stretching for ten minutes a day). Learn a new skill with a new online course. Setting a new healthy eating plan. Baking a new recipe every week. Something that is in your control, outside of the children’s need. Something only for you and your purpose. It won’t change your world. It can’t cure PDA but softening the edges can be really helpful. If this can be a regular routine this will ground your nervous system too. To rely on something predictable, that is enjoyable ad controllable by you will help on those days that everything is pure chaos.
Try the 5% rule;
Work alongside the 5 percent rule. When the moment feels tough and unbearable what realistically would make your day just 5 percent better and even extend your child. What would make their day just 5 percent better. For me it’s always either a run, a hot bath or lighting my favourite candle (depending on how much energy I have left to give to focus on that 5 percent). What would make your day 5% better right now?
Stop fighting reality and lean into it:
The most important consideration that has taken me far to long to full get on board with is to stop fighting relaity and lean into it. When you stop fighting reality and start working with it, the emotional experience you will have will be different, the burnout will lessen. This mindset change has the power to change your daily mood, your mindset and occurrence of burnout. It is not about controlling the situation but how you meet it. Not because your situation is easy but because you are not trapped inside it.
Extra Support is available!
Sometimes just speaking to someone who genuinely has experienced this is the perfect therapy!
If you would like help finding space for both your needs, siblings needs, family needs and PDA then book onto a bespoke family support sesion. An hours zoom or telephone call (you choose) to carve forwards a new path, that feels more positive.
Perhaps you are new to PDA and have a tonn of questions. A PDA session may be suitable for you. Another bespoke session either via zoom or telephone (you choose) but slightly longer to allow for lots of brainstorming and questions.
If you'd rather a digital download, you can access a PDA behaviour support one here:
Finally remember there are plenty of blogs and podcasts you can read/listen to for FREE on the subject of parenting and neuro-diversity.